tag:blogger.com,1999:blog-42894676260852198502024-03-05T02:50:20.961-05:00Aidan... With EosLiving, Loving, and Thriving with a Medically Complicated ChildCarolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.comBlogger197125tag:blogger.com,1999:blog-4289467626085219850.post-86203129827399393722016-11-13T05:00:00.005-05:002016-11-13T05:00:53.745-05:00We are struggling...<div dir="ltr" style="text-align: left;" trbidi="on">
<!--[if !mso]>
<style>
v\:* {behavior:url(#default#VML);}
o\:* {behavior:url(#default#VML);}
w\:* {behavior:url(#default#VML);}
.shape {behavior:url(#default#VML);}
</style>
<![endif]--><br />
<!--[if gte mso 9]><xml>
<o:OfficeDocumentSettings>
<o:RelyOnVML/>
<o:AllowPNG/>
</o:OfficeDocumentSettings>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves>false</w:TrackMoves>
<w:TrackFormatting/>
<w:DoNotShowPropertyChanges/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
</w:Compatibility>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="79" Name="header"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:11.0pt;
mso-para-margin-right:0in;
mso-para-margin-bottom:0in;
mso-para-margin-left:0in;
mso-para-margin-bottom:.0001pt;
line-height:13.0pt;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Arial","sans-serif";
mso-ascii-font-family:Arial;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:"Times New Roman";
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Arial;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;}
</style>
<![endif]-->
<br />
<div class="normalwithspacing">
This is all so hard to say - hard to put out there
into the world. But in an effort to explain why we've been so
self-absorbed, so absent lately - I think the time has come to explain.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
The past couple of months have been a really rough
time for us.<span style="mso-spacerun: yes;"> </span>Around mid-August, Aidan
very abruptly began to have symptoms that have only worsened since then.<span style="mso-spacerun: yes;"> </span>He started spiking fevers without other signs
of being sick – just random fevers that would stay for a couple of days, go
away for a few days, and then come back.<span style="mso-spacerun: yes;">
</span>He also became excessively sleepy, falling asleep often during the day
even though he was still getting plenty of nighttime sleep.<span style="mso-spacerun: yes;"> </span>At the same time, he began having headaches
and complaining that he was cold during the day, and was throwing up overnight
nearly every night.<span style="mso-spacerun: yes;"> </span>All of this was very
unlike Aidan, but we chalked it up to the likely explanation that he had been
catching virus after virus.<span style="mso-spacerun: yes;"> </span>After about
3 weeks of this, and just a few days before a much-anticipated trip to visit family, we took Aidan to see his pediatrician, who had some labs done
that indicated that his white blood cell count was extremely low.<span style="mso-spacerun: yes;"> </span>They told us he wasn’t allowed to leave our
house for the next week, until the labs could be repeated and compared.<span style="mso-spacerun: yes;"> </span><b>God, it was a long week</b>. A week later, the labs showed a lot of
improvement, and he was allowed to go back to school – with instructions for us
to call immediately if another fever happened.<span style="mso-spacerun: yes;">
</span>It was less than a week before his next fever, and he was sent again for
labs – showing a lower WBC count than the previous labs, but not low enough to
be dangerous.<span style="mso-spacerun: yes;"> </span>We sent him back to
school.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
As all of this was going on, Aidan’s sleepiness was
getting more pronounced.<span style="mso-spacerun: yes;"> </span>He wasn’t able
to make it through his school day without nodding off in a chair or falling
deeply asleep on the floor. It was difficult to wake him, and when they did
wake him, he became angry and destructive – hitting his teachers and nurse,
yelling angrily, and even throwing furniture in the classroom.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">This
is not our Aidan.</b><span style="mso-spacerun: yes;"> </span>The only explanation
he could give us was that he was very tired, and being awake made him angry.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
It’s now been nearly 3 months.<span style="mso-spacerun: yes;"> </span>Aidan is increasingly angry and violent and
destructive.<span style="mso-spacerun: yes;"> </span>Nobody knows why.<span style="mso-spacerun: yes;"> </span>At this point I think it’s important to
mention that all of this began a few weeks before leaving his Pre-K.<span style="mso-spacerun: yes;"> </span>I’d like to believe it’s behavioral in
response to the big Kindergarten life change, but given that it started well in
advance of that change, I don’t think that’s it – or at least, I don’t think
it’s the whole story.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
It’s clear to us that something is wrong.<span style="mso-spacerun: yes;"> </span>This exhaustion came from nowhere.<span style="mso-spacerun: yes;"> </span>The radical personality change came with
it.<span style="mso-spacerun: yes;"> </span>I am heartbroken that whatever this
is, is causing him to be unsuccessful at school.<span style="mso-spacerun: yes;"> </span>When he is able to attend, and when they are
able to keep him awake, he’s barely completing any assignments or interacting
with other children, because he’s so miserable and angry.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
Care to see what his instructional day looks like? </div>
<div class="normalwithspacing">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9ZgxvZOgus6z-jrjASncauv6_swWsSFj1Ox5C1mB_3agISEW82aA09nqk0XBLzl5tltalYkwxVhUOThYOuqWL7ZRBd0QVK5TN0fbjzRizC-VxYRLHkJ5p49sm9u7hxtlO-d6QXWVfsi4/s1600/School1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9ZgxvZOgus6z-jrjASncauv6_swWsSFj1Ox5C1mB_3agISEW82aA09nqk0XBLzl5tltalYkwxVhUOThYOuqWL7ZRBd0QVK5TN0fbjzRizC-VxYRLHkJ5p49sm9u7hxtlO-d6QXWVfsi4/s400/School1.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVllE6OWI3xePxrFt4Okf4tOyZhBxIsdE0Iy5m_XVyW_6mqTsPMYP-5n4QEGjV89u6KRyTCbA2BOtE2ka7p0fPfsDQDNxIIzewupFSLzXw_kN_dKDerrYL-FlR8p7HvN4GKU8mvZBWL2U/s1600/School2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVllE6OWI3xePxrFt4Okf4tOyZhBxIsdE0Iy5m_XVyW_6mqTsPMYP-5n4QEGjV89u6KRyTCbA2BOtE2ka7p0fPfsDQDNxIIzewupFSLzXw_kN_dKDerrYL-FlR8p7HvN4GKU8mvZBWL2U/s400/School2.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3xu_ycFZj68kDG5UWGlahyqpFVr9kdKyHj_oVkulA33UNuPgoQqwt14mQYTNk5KOpPsQVP8DQOa1t9E-Un6ecl3VHc9zaraAzeQDT-V87o66eC9-iEdsaQ0yfAoYcI1jQgoE_-5kPoSk/s1600/School3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3xu_ycFZj68kDG5UWGlahyqpFVr9kdKyHj_oVkulA33UNuPgoQqwt14mQYTNk5KOpPsQVP8DQOa1t9E-Un6ecl3VHc9zaraAzeQDT-V87o66eC9-iEdsaQ0yfAoYcI1jQgoE_-5kPoSk/s400/School3.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAKKDzBLwFSeCgt2JGL1PlgKTOjsHCGY8PFdeq4fdIhoynuKF6NZjeDzM7LV3TELY6sIscIBI_vV4isjWkudHLALQ3zzx0pwMzabAT8TVwpq3iXb3NeIhJS_VDX37mfdQxXDKyBlX3_S0/s1600/School4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAKKDzBLwFSeCgt2JGL1PlgKTOjsHCGY8PFdeq4fdIhoynuKF6NZjeDzM7LV3TELY6sIscIBI_vV4isjWkudHLALQ3zzx0pwMzabAT8TVwpq3iXb3NeIhJS_VDX37mfdQxXDKyBlX3_S0/s400/School4.jpg" width="400" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvi0TpWVjx7-oBit4rvrcUJ6OZNoFZ18hf7Kylyy0Ycxur_zlRxK0sm51XPxj8KLDUJFGJ5U4MTVKd9c0y01YDkfGbm-IKNBQgjn_5KgAjVwyDsO2lnM_HmmGDhTfpQ3XmPlGsnIChRMc/s1600/School5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvi0TpWVjx7-oBit4rvrcUJ6OZNoFZ18hf7Kylyy0Ycxur_zlRxK0sm51XPxj8KLDUJFGJ5U4MTVKd9c0y01YDkfGbm-IKNBQgjn_5KgAjVwyDsO2lnM_HmmGDhTfpQ3XmPlGsnIChRMc/s400/School5.jpg" width="400" /></a></div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
And it's not just at school, either... At home, out in the community, at dad's... Everywhere.</div>
<div class="normalwithspacing">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEW-QT21Wn6R1TEsbTiHJpKCYh2WQLMJ3RvAt-KRuHsUvpWM5ZIW5BoaO_Og3CEkKqEW_4g_-og5gglAc_9Fj47Mh9x-d6Vf2NbgKHD88VecJe5iZ8YESaPo7t8gglZ1uyEjvDb15MZLQ/s1600/Home1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEW-QT21Wn6R1TEsbTiHJpKCYh2WQLMJ3RvAt-KRuHsUvpWM5ZIW5BoaO_Og3CEkKqEW_4g_-og5gglAc_9Fj47Mh9x-d6Vf2NbgKHD88VecJe5iZ8YESaPo7t8gglZ1uyEjvDb15MZLQ/s400/Home1.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPKcyAH-VNVlCMvM2SoAo6mkKj6hyphenhyphen5-r6Irl6R3-g4zcZtP7DWQylBWedy8o908IcmSUOrjvrwCK6JYvhiIK6E2n7Ih3yYHP5S7Ov8TxOz4Fr5-UcJbMNvJ6XTfxzgmAnC8q2fNKT3myI/s1600/Home2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPKcyAH-VNVlCMvM2SoAo6mkKj6hyphenhyphen5-r6Irl6R3-g4zcZtP7DWQylBWedy8o908IcmSUOrjvrwCK6JYvhiIK6E2n7Ih3yYHP5S7Ov8TxOz4Fr5-UcJbMNvJ6XTfxzgmAnC8q2fNKT3myI/s400/Home2.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpaB7EzTO8ELsMZHaYfh6jCczHfyxww_9OCtyVl-8Ceij-RHKWcBHXh8CgNoXbtl-lviH88Dfk4oNm54VEQ6kggPxeiDQxndy1-RPps11hBFasxCymM3_o0rxfbucOXhdsthTwsy1immM/s1600/home3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpaB7EzTO8ELsMZHaYfh6jCczHfyxww_9OCtyVl-8Ceij-RHKWcBHXh8CgNoXbtl-lviH88Dfk4oNm54VEQ6kggPxeiDQxndy1-RPps11hBFasxCymM3_o0rxfbucOXhdsthTwsy1immM/s400/home3.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKc7YoV7h6zkgsqFiVoJzmVOvNBbaDBApuY-S3xrCNSSWPuKO6m5Lv4hCkKDoZtRPpakAFLEnwSv4woLb0sXLWWnruvYwHPYr7dasJHle2m9M_qu8zWUWGi-kod37FM0svgReZzX-WBTU/s1600/Walmart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKc7YoV7h6zkgsqFiVoJzmVOvNBbaDBApuY-S3xrCNSSWPuKO6m5Lv4hCkKDoZtRPpakAFLEnwSv4woLb0sXLWWnruvYwHPYr7dasJHle2m9M_qu8zWUWGi-kod37FM0svgReZzX-WBTU/s400/Walmart.jpg" width="300" /></a></div>
<div class="normalwithspacing">
</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
Over the past couple of months, a scary new symptom
has arisen.<span style="mso-spacerun: yes;"> </span>Aidan thinks that he hears
voices talking to him that come from inside his body.<span style="mso-spacerun: yes;"> </span>Sometimes he thinks it’s a “meanie bug” who
is talking to him, laughing at him, and making him make bad choices.<span style="mso-spacerun: yes;"> </span>Sometimes, he thinks it’s his heart talking
to him, making him do these awful things.<span style="mso-spacerun: yes;">
</span>The violent outbursts are becoming even more frequent.<span style="mso-spacerun: yes;"> </span>He’s hurting his teachers, the school staff,
and his nurse on a daily basis.<span style="mso-spacerun: yes;"> </span>I truly
don’t know how much worse things can get.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
What’s been done so far – the pediatrician ran
several sets of labs to check his white blood cell count, and also sent off
blood cultures (which didn’t grow anything) because of the fevers.<span style="mso-spacerun: yes;"> </span>He’s had an EEG, and MRI, a longer
(overnight) EEG, and a sleep study.<span style="mso-spacerun: yes;"> </span>Both
the EEG and MRI showed nonspecific abnormalities, but nothing that concerned
his neurologist enough to move forward with any treatment.<span style="mso-spacerun: yes;"> </span>The sleep study showed that he’s having a lot
of limb movements, and they’re waking him up.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
As I’m sure you can imagine, things at school are
not good.<span style="mso-spacerun: yes;"> </span>Our school district is
absolutely failing him when he needs their support the most.<span style="mso-spacerun: yes;"> </span>When this all
began, the decision was made to remove him entirely from general education, and
place him full time in Autistic Support.<span style="mso-spacerun: yes;">
</span>This was an immensely difficult decision for us - we had never even vaguely entertained the thought that Aidan wouldn't succeed in a mainstream classroom. Almost immediately after that decision was made, the school began to
push us for a move out of Autistic Support and into Emotional Support at a
different school, due to his behaviors.<span style="mso-spacerun: yes;"> </span>I maintained that I’d
consider any placement that would help him, but I was not going to be okay
(EVER) with removing him from the services that he’s entitled to and
desperately needs.<span style="mso-spacerun: yes;"> </span>When they finally got
someone from Emotional Support out there to see him, they agreed (with me) that
AS is the right placement for him.<span style="mso-spacerun: yes;">
</span>Immediately upon hearing this, his school moved to reduce his school
day.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
I nearly lost my mind.<span style="mso-spacerun: yes;"> </span>They were already doing <b style="mso-bidi-font-weight: normal;">nothing</b> whatsoever to work toward reintegrating him into general
education, had given up on actually teaching him <b style="mso-bidi-font-weight: normal;">anything</b>, and were simply assigning staff members to babysit him
until the end of the day.<span style="mso-spacerun: yes;"> </span>He was being
allowed to choose his own schedule full of preferred activities only – they
100% removed all educational demands and let him do whatever he wanted,
whenever he wanted.<span style="mso-spacerun: yes;"> </span>It is clear to me
that a reduction of his school day was nothing but an obvious attempt to make
their lives easier and free up their staff.<span style="mso-spacerun: yes;">
</span><b style="mso-bidi-font-weight: normal;">I’m not going for it.</b></div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
Nearly three months into the school year, we have
yet to see a behaviorally-trained 1:1 assigned to Aidan – although the school
knew before he started that this was precisely the intervention that
facilitated his success in his last school.<span style="mso-spacerun: yes;">
</span>After many requests, we were finally told on Halloween that they were
moving forward with obtaining a 1:1 – but nothing has happened yet.<span style="mso-spacerun: yes;"> In the meantime, Aidan spends almost the entirety of his day secluded in an empty classroom, or - when he's particularly angry and unmanageable - closed in a small padded room on his own.</span></div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
Where we are now – we’ll need to see a sleep
neurologist to figure out the sleep study results.<span style="mso-spacerun: yes;"> </span>We will also see developmental pediatrics again next week to
discuss bringing him in to see a psychiatrist for a more comprehensive mental
and behavioral health evaluation.<span style="mso-spacerun: yes;"> </span></div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
I am so scared for him.<span style="mso-spacerun: yes;"> </span>He was such a wonderful student, classmate,
and friend – and then this switch flipped.<span style="mso-spacerun: yes;">
</span>He’s miserable.<span style="mso-spacerun: yes;"> </span>We are
miserable.<span style="mso-spacerun: yes;"> </span>His school desperately wants
to pass him off somewhere – ANYWHERE – else.<span style="mso-spacerun: yes;">
</span>He is so tired, and falls asleep during the day so deeply that his nurse
and teachers can’t even wake him.</div>
<div class="normalwithspacing">
<br /></div>
<div class="normalwithspacing">
We are investigating absolutely every avenue we can think of. Has something gone horribly wrong in his brain? Are his medications causing this? Is this due to a lack of enough restful sleep? Is there some mental illness at play? Is this just the next chapter in parenting a child with Autism? Please, internet friends, if you have ideas - we need them, desperately. </div>
<div class="MsoNormal">
<br /></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com2tag:blogger.com,1999:blog-4289467626085219850.post-44004109433681070982016-07-09T00:05:00.000-04:002016-07-09T00:05:42.964-04:00New Beginnings<div dir="ltr" style="text-align: left;" trbidi="on">
I have written and rewritten this post half a hundred times now. For the longest time, I felt far too lost to write anything at all about our family, our lives, or the direction we were headed. I just didn't know what to say. <br />
<br />
Life went on, of course. Aidan turned 5, he graduated Pre-K, and we're all eagerly preparing for Kindergarten. Things are very much as they've always been - doctor's appointments, ER visits, inpatient stays, birthday parties, playdates, and everything in between.<br />
<br />
But everything is different at the same time. We live at our house. Daddy lives at his house. Since late last year, we have been working to figure out what's best for all of us, and this is undeniably it. We worried about how he would take it, or what he would wonder or ask - the truth is, he seems to understand and accept this essentially without question. He understands that he is loved without question, and we are all moving toward the happiness we deserve. It took us a lot of time and soul searching to understand that, for our family, that happiness didn't involve all of us staying together.<br />
<br />
Enough about that. It's the elephant in the room, and if you didn't know, you do now. Families come in all shapes and sizes. Ours is no less for the changes we have made. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgpmgPcrsIpiCBd5WspuQ592QcXZ5nFTMYLcI06enmBDZkGZGclHSkmyd9ua28VeIdrjU7NqELQHjRycP6UFsHOYG443xyXHS4tqnZ7o8fnV0HMcgNFh0NBjUuZoqZpfOit-hUpgZFwjs/s1600/Aidan+Family.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="539" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgpmgPcrsIpiCBd5WspuQ592QcXZ5nFTMYLcI06enmBDZkGZGclHSkmyd9ua28VeIdrjU7NqELQHjRycP6UFsHOYG443xyXHS4tqnZ7o8fnV0HMcgNFh0NBjUuZoqZpfOit-hUpgZFwjs/s640/Aidan+Family.jpg" width="640" /></a></div>
<br />
<br />
<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-77476687403044962762015-10-26T01:33:00.004-04:002015-10-26T01:33:52.674-04:00Genetics and Complex Care<div dir="ltr" style="text-align: left;" trbidi="on">
I think it's been a while since we've actually had anything hopeful to say, but as we wrap up October, we've been moving forward and feeling kind of positive about things.<br />
<br />
We did see Genetics, although it was not the most productive visit. Disappointing, since we've been waiting so long to get in there. Their only idea, really, was to test him for Russell Silver Syndrome - a congenital growth disorder. We'll see how that turns out, although I don't expect any big answers there. He doesn't look like an RSS kid. I don't even think Genetics expects answers. On the up side, Aidan thought the Genetics waiting room was the most fun waiting room he's seen in a long time.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyTjmMKYRLsSIK2N_nznj1IIB5lbOfkeRCp0vcl7VGpRpbTG3WKdOQZ1EMHXOSaZ-y-XAPfhco3Cp0YDQqmyveRsgnZaEJ6mI1o1IbY6s-tYn6N0Pu7GqBSUfyKSCsu_eqHC1xypahUCw/s1600/genetics.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyTjmMKYRLsSIK2N_nznj1IIB5lbOfkeRCp0vcl7VGpRpbTG3WKdOQZ1EMHXOSaZ-y-XAPfhco3Cp0YDQqmyveRsgnZaEJ6mI1o1IbY6s-tYn6N0Pu7GqBSUfyKSCsu_eqHC1xypahUCw/s400/genetics.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being silly at Genetics</td></tr>
</tbody></table>
Thankfully, the Diagnostic/Complex Care Center visit went better. So much better. I have no idea how we got in to see Dr. M so quickly, but I'm thankful for whatever backstage witchcraft and wizardry made it all happen. Anyway, the plan from our visit was to have Dr. M's office coordinate all of our future inpatient stays, which should hopefully make a big difference in our overall level of frustration every few months. He will also be contacting Genetics to suggest that they dig deeper on the PHKB mutation. The bigger (scarier?) thing he's going to work on is having CHOP's Mito team review Aidan's chart get their thoughts and see if we can start evaluating him for a Mitochondrial disease. I don't know exactly how to feel about this, so for the moment, I'm going to just focus on being hopeful that this is a new idea that we haven't explored yet, and maybe it will take us in new directions that will give us betters ideas for treatment.<br />
<br />
Aidan has been so tired lately. I feel like all I hear from him is that he's too tired to play, or too tired to go anywhere. I don't know what's going on. His night sleep isn't good - but it's certainly not worse than it has been. Weekend visits to Nikki's new house have been pretty sleepy - I just don't know how to make this better, and it breaks my heart.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6t8arSGeLRUmKkLuXkRDkeiSV6z_ZaDOLKkXnRf3GU7jPBPFyX8kwMn1rGmArptnJox1H8whqVAYZ_iIh66s3A4OjNa9fzTp5b_O4xGWpDdzkz-XKEEjD-A-YG-c1NLznuidG8kdja_w/s1600/asleep.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6t8arSGeLRUmKkLuXkRDkeiSV6z_ZaDOLKkXnRf3GU7jPBPFyX8kwMn1rGmArptnJox1H8whqVAYZ_iIh66s3A4OjNa9fzTp5b_O4xGWpDdzkz-XKEEjD-A-YG-c1NLznuidG8kdja_w/s400/asleep.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5P_WaltEYBKTwXq0BAKWXvJbwQiTCSAJa-vxOJerI2VrWV0Rx9-LC1HGihQlDy4saiT52muInZYXQqDyuVHzJi9yQguIP2j3ze2mhoQ0jALr22QCoRTgHP6-F3kVgnYI4PcBUPe2u78I/s1600/asleep3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5P_WaltEYBKTwXq0BAKWXvJbwQiTCSAJa-vxOJerI2VrWV0Rx9-LC1HGihQlDy4saiT52muInZYXQqDyuVHzJi9yQguIP2j3ze2mhoQ0jALr22QCoRTgHP6-F3kVgnYI4PcBUPe2u78I/s400/asleep3.jpg" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4izv6NXLmyRoHX1Sv3VAXGNgezgPSpY242771vzi_pNaA5vGgojK9hlzvSxSqWy94Vr9PG8Ri_NOqKHY8qqL22ZoUprbTEOnhhp0uPqY3CD4MsQBU9Dhy5tmMMLsl3Cqw2EVF8iikBYI/s1600/asleep2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4izv6NXLmyRoHX1Sv3VAXGNgezgPSpY242771vzi_pNaA5vGgojK9hlzvSxSqWy94Vr9PG8Ri_NOqKHY8qqL22ZoUprbTEOnhhp0uPqY3CD4MsQBU9Dhy5tmMMLsl3Cqw2EVF8iikBYI/s400/asleep2.jpg" width="300" /></a></div>
<br />
But we do still get to see this Aidan - our sweet little goofball, who brings so much light into our lives. I'll do anything - take him anywhere, to see anyone - to get just a bit more of this face into our lives.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFIrdR8Pk1-lmP9JyG0CL7qm5Uakswvj3Aav4DUaKcbZqW3_-lhgUvEbxHcT9CibY4HuxR91ZH9Y5JxSIlVQy3ge_McrX6dMI6EHyzO1i4SEBhoHO57tW3md0miuqbb8Io_g9w7-4nlYQ/s1600/silly.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFIrdR8Pk1-lmP9JyG0CL7qm5Uakswvj3Aav4DUaKcbZqW3_-lhgUvEbxHcT9CibY4HuxR91ZH9Y5JxSIlVQy3ge_McrX6dMI6EHyzO1i4SEBhoHO57tW3md0miuqbb8Io_g9w7-4nlYQ/s400/silly.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly :)</td></tr>
</tbody></table>
The rest of this month will see Aidan at CHOP for his swallow study and his GJ tube change. Hopefully, he'll be back on his feet and feeling good in time for Halloween - he's got big Trick or Treat plans with his best buddy.<br />
<br />
Still working to schedule our trip to Pittsburgh. I know they've been reviewing his records, and hope to get in to see them soon.</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-73840636366364731732015-10-11T13:10:00.001-04:002015-10-11T13:10:25.670-04:00Lots of appointments to come!<div dir="ltr" style="text-align: left;" trbidi="on">
Soooo, it's been <strike>a few days</strike> <strike>a while</strike> <strike>a month</strike> forever. We've been okay, hanging in and trying to take things one day at a time. Things are just so overwhelming right now, and writing about them is sometimes just a little more than I can handle. But really, we are doing okay, we just have so much on our plates.<br />
<br />
We've done some fun things in the past month - the Strides for Safe Kids walk was a good time and Aidan did surprisingly well in the crowd. After that event, Aidan got to go to a Shopkins trading event - which was *awesome* - he did such a great job talking to the other children and asking if they wanted to trade. No tears - I was <b>so proud</b>! We also attended the Autism Awareness event at the zoo a few weekends ago, which has grown into a really nice event with great attendance and helpful networking opportunities. I love that it's at our local zoo, which Aidan knows so well that it doesn't overwhelm him.<br />
<br />
He's also been working hard on feeding skills, and has started feeding therapy. It's only twice a week, and due to scheduling stupidity, it works out to 3 times every two weeks, which is only slightly better than nothing. Luckily, he has a great team of people in his life, who continue to work with him and encourage him every day at school, and recently I happened to walk in on him actually nibbling at a rice flour pancake. Proud mama over here! He doesn't have much of a bite with his molars, especially on his left side, and getting anything bigger than a crumb in his mouth makes him gag - but <b>he's getting there!</b> Unfortunately, his swallow is questionable and needs to be more formally evaluated for airway safety later this month, so until then, we're not working on liquids.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQcxz8Kc1tRq0n3UAtYxEmi6TgeMQCLBti5kKAtFCrfZLOA3rJjJDOo_SG7bjX4wZxOYZdaMVrEYpwrAR6Zc1Mycmgg5XLBWp3tnOQxBRgR938nyG67Y4X6Q8CG5xPywXBKSXRqvPHfo/s1600/pancake.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaQcxz8Kc1tRq0n3UAtYxEmi6TgeMQCLBti5kKAtFCrfZLOA3rJjJDOo_SG7bjX4wZxOYZdaMVrEYpwrAR6Zc1Mycmgg5XLBWp3tnOQxBRgR938nyG67Y4X6Q8CG5xPywXBKSXRqvPHfo/s400/pancake.jpg" width="300" /></a></div>
<br />
<br />
October brought us the tiniest bit of drama - an urgent care visit, and eventually an ER visit for a yucky stoma. I really hate stoma problems, and we're always so lucky that his stoma is so beautiful and infection-free. But really kind of out of nowhere, it sprouted granulation tissue that got infected and painful, and things were just no fun for a while there. Right, as you would imagine, when I had no time to spend in the Urgent Care/ER all night long, because <b>of course</b>. But I'm thanking my lucky stars that's all it was, because as I sit here writing this, I'm watching some of the babies I love from afar go through ten kinds of hell inpatient, and I know how much worse everything could be. Aidan's been doing pretty well lately, and I don't take that for granted even for a minute.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlk60QkYpOTC8gIXocFWh5v-g6ENEIELm8l8aMWYnr0Lun8BD-7jwhvbq9tR9nvQo5d3ai1zJ3qqxyGSD9Ty84fcndnoM-ATPoD8lPt63n4diexzz0AKodMSMWlnwAFZ-vPj45Bd1jeuc/s1600/ER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlk60QkYpOTC8gIXocFWh5v-g6ENEIELm8l8aMWYnr0Lun8BD-7jwhvbq9tR9nvQo5d3ai1zJ3qqxyGSD9Ty84fcndnoM-ATPoD8lPt63n4diexzz0AKodMSMWlnwAFZ-vPj45Bd1jeuc/s400/ER.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV7BcL7gnFIOb3imVibOeoE5dDgO-_60j14fBuEqE973I_ocphxrXA0njjyO-O-St2kSQIe-f1XM-yxceS0tqW4kDYii88ln-YUEtLLXI_9CMBRMaVp9c8KNjq7LiOAsQXALFIhdmGbUI/s1600/urgent+care.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV7BcL7gnFIOb3imVibOeoE5dDgO-_60j14fBuEqE973I_ocphxrXA0njjyO-O-St2kSQIe-f1XM-yxceS0tqW4kDYii88ln-YUEtLLXI_9CMBRMaVp9c8KNjq7LiOAsQXALFIhdmGbUI/s400/urgent+care.jpg" width="300" /></a></div>
<br />
<br />
<br />
We've had to stop Karate for now. Aidan's little body is just too tired. He just can't do it. And I can't keep forcing him to do something that's <i>just too much</i>. <br />
<br />
Heis participating in soccer, which is super adorable. Although I might be using the word "participating" loosely, since he really likes to just sit on his ball and watch once he's tired, and without 1:1 coaching, he forgets what he's doing and wanders off. Don't care. <b>Adorable</b>. After soccer wraps up, he'll be taking a break from sports until we get his energy levels figured out, because I really think there's something awry here. I'm hopeful that either CHOP or CHP has some ideas for us.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv0ha6mJO8iHflxQIpE-p1CkzVJwfJHd4KVpqQPeQUX6ZTd16hWEXnvnV14TEScIO7N2nTiN5scM4tWj1qgRAk8_kZSDpcxoOl2LXivHk9j1g2kob1u_GgwxvUbvipoFSm7m10XHFtldg/s1600/soccer.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv0ha6mJO8iHflxQIpE-p1CkzVJwfJHd4KVpqQPeQUX6ZTd16hWEXnvnV14TEScIO7N2nTiN5scM4tWj1qgRAk8_kZSDpcxoOl2LXivHk9j1g2kob1u_GgwxvUbvipoFSm7m10XHFtldg/s400/soccer.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4KaJIirvMI441obEcaBG5I_jpoJTmpMzY9XdbjLFSVU519fO7Cwb7J9vYqqg40OxhirwypLVcaLFcgiHTSIjq-c5XGjD_7SQ3QE6hkIcDGInGRpnuljfLwzUtoWZdimxHHvTF6I9Ozg8/s1600/soccer2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4KaJIirvMI441obEcaBG5I_jpoJTmpMzY9XdbjLFSVU519fO7Cwb7J9vYqqg40OxhirwypLVcaLFcgiHTSIjq-c5XGjD_7SQ3QE6hkIcDGInGRpnuljfLwzUtoWZdimxHHvTF6I9Ozg8/s400/soccer2.jpg" width="300" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYioLOBL-Yu4n_B1GRPo5pZdIPt3zuUMfcujp35fetdFqvrxnpDqSC__M0wsMrzpB2kf4Fc_4NBYDTn0ve14DMBf-Gkri1flm_Rj8aybc8aqPpKM2FJG0vzD10_bZcV4xiHDTexODx9nc/s1600/soccer3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYioLOBL-Yu4n_B1GRPo5pZdIPt3zuUMfcujp35fetdFqvrxnpDqSC__M0wsMrzpB2kf4Fc_4NBYDTn0ve14DMBf-Gkri1flm_Rj8aybc8aqPpKM2FJG0vzD10_bZcV4xiHDTexODx9nc/s400/soccer3.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's the dainty one, seated while everyone else plays.</td></tr>
</tbody></table>
The rest of the month is coming at us fast and furious - this week
we'll see Genetics (this one's kind of a big deal, since we're looking
for big answers here, or at least big ideas and a path forward) and the
dentist (not a scary one for us, but a rough one for Aidan). Next week,
the Complex Care/Diagnostic Center which is another big deal for us. I
don't even really know what to expect from that visit, I just know that
we need help, and we're hoping they can give it. The following week,
Aidan's swallow study, and then he's inpatient for a tube change.
Hopeful that he stays healthy and is discharged and feeling well enough
for Halloween fun.<br />
<br />
We have forwarded his records along
to Pittsburgh and are awaiting word onwhen we'll be traveling. I'm
nervous - not knowing exactly when we'll go, and how I'll handle it with
work, and whether it will even give us any answers - all if it makes me
sick to my stomach, if I'm being honest. But these are all the right
things to do, and the right steps forward, and I just have to trust that
Aidan will find answers down one of these avenues.<br />
<br />
We'll keep you posted as appointments happen and travel plans come together. Wish us luck! </div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-87119842009283003962015-09-13T22:45:00.000-04:002015-09-13T22:45:52.437-04:00September already? Playdates, Sesame Place, and Support<div dir="ltr" style="text-align: left;" trbidi="on">
What a week. September already!<br />
<br />
We kicked it off with a playdate with one of his best friends. We played at Jungle Wonder, which is an awesome, fun, deliciously germy place to run, jump, and climb. It was fun to watch him have so much fun with her, but after the first half hour, it was clear that he was struggling to keep up. As she ran and climbed, he started to lag behind. His little body just gets so tired. What's tough is that he's old enough now to <i>know</i> that he's not keeping up. There's really nothing quite as sad as hearing your four-year-old say "Mommy, my friends have blazing fast speed. Why don't I have blazing fast speed?"<br />
<br />
I'm grateful that he's able to get out there and play. Grateful that he's not immunocompromised, or so medically fragile that playdates are a pipe dream. I just wish I understood why he's not keeping up, and why his body isn't supporting his four-year-old lifestyle. <br />
<br />
<br />
Anyway - on a happier note - we've officially reached the age of eagerly awaiting toy catalogs in the mail. This week, a sale flyer from Learning Express came, and he picked out all of the Shopkins that he hopes Santa brings. He visited the toys he's loving at Target and we decided to take pictures so he won't forget what to tell Santa all about. Way too cute.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsH1WIoDvEwcKPsw4DoZnFcdzgbaKAuISNne-9GFXnjqdpxqtTL16lYZEEvWeMDT81uKCtJWMMjnL7sOV28SjcdXm2GfPu9OmIqWhFLkzRdBNb7CLwmdgLOpLXFQcv0qb2xZK0VzA-zo4/s1600/Aidan1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsH1WIoDvEwcKPsw4DoZnFcdzgbaKAuISNne-9GFXnjqdpxqtTL16lYZEEvWeMDT81uKCtJWMMjnL7sOV28SjcdXm2GfPu9OmIqWhFLkzRdBNb7CLwmdgLOpLXFQcv0qb2xZK0VzA-zo4/s400/Aidan1.jpg" width="400" /></a></div>
<br />
It was pretty nice to have a long weekend at my disposal - I took advantage of it by having a special Mommy/Aidan date at Sesame Place. It was <b>amazing</b>. He loved the rides and even met some characters. I was so proud of him - everything he tried, his behavior, everything. It was really the perfect day. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG3E_4PiTXnaXpzFxnK2Xkp0Qbey2C_a2ir27NXKb7lS1uyWrB1YH7Fen0zutGyIRL5Hb7noSSvf_4VnoIUrbfQttRXrdC0yJm22DiFOmvA7o8LuWtc4VShdKiuiZCBR0SWoxScy_1er0/s1600/Aidan2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG3E_4PiTXnaXpzFxnK2Xkp0Qbey2C_a2ir27NXKb7lS1uyWrB1YH7Fen0zutGyIRL5Hb7noSSvf_4VnoIUrbfQttRXrdC0yJm22DiFOmvA7o8LuWtc4VShdKiuiZCBR0SWoxScy_1er0/s400/Aidan2.jpg" width="400" /></a></div>
<br />
<br />
Tuesday brought me to the Support Group that Mimi recommended. As the other moms talked about what brought them to the group - some more than a decade ago - I thought about my own reasons. The short version - it was a recent visit to Nutrition where I came especially unglued, and Mimi thought I might need some other moms to connect with. She wasn't wrong.<br />
<br />
It felt right to be there. These moms have been through the ringer, more than a few times. Their children have been through all of the worst and scariest things, and these moms lived through all of it with them. There seemed to be this common thread for most of us - nearly everyone there had a child with an underlying issue that was still undiagnosed. A known collection of problems, a suspicion that there must be <i>some underlying cause</i>, but no unifying diagnosis. As we each introduced ourselves and spoke of our children, there was this easy back-and-forth between everyone. Sharing of ideas and thoughts, and when it came time for me to speak, these veteran moms immediately thought <b><i>Mito</i></b>.<br />
<br />
It would be an answer - but it's not the answer I want. I'm so hopeful that Rare Care and Diagnostic/Complex Care have ideas that would explain things and get us on the right track. All I want for him is to feel better - to feel <b>good</b>, to live a happy, pain free life, and to feel <b>normal</b> - whatever normal may turn out to be.<br />
<br />
While we work on figuring "normal" out, my heart is always warmed by the availability of volunteer organizations whose sole purpose is to brighten the days of children whose daily lives are a struggle. Recently, someone told us about Feel Better Friends (http://fbfdolls.org/) - handmade dolls crafted by volunteers for children battling cancer or chronic illness. The dolls are made in the likeness of the little fighter they are sent to. Aidan's friend (creatively named <i>Aidan</i>) sports a button feeding tube, a backpack, and a medic-alert bracelet - <i>just like him! </i>Also, little Aidan loves school buses - just like a little guy I happen to know and love.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuC1BLtI6n-WmyLWJls8wyLZdkgvnHY8J3qoS3qbF6Kt3o7kSC5sxf_znzL_ZfQ01zSt13LaM_CQ0G03w7dUtkeLHL7l-7LmINYyv3uO6u7o9emZL39ESbhXpR5oPF8Q-yx2ELKunSMF4/s1600/Aidan5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuC1BLtI6n-WmyLWJls8wyLZdkgvnHY8J3qoS3qbF6Kt3o7kSC5sxf_znzL_ZfQ01zSt13LaM_CQ0G03w7dUtkeLHL7l-7LmINYyv3uO6u7o9emZL39ESbhXpR5oPF8Q-yx2ELKunSMF4/s400/Aidan5.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Seriously, how adorable?</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihZ42DbhlFUgSkBUGZcxUu-JTDs2nqdCVN_FZ8DjsbtycYMGS4MJsQ3BydzInxN9RbblcCfX8NOfskSOg8AuKP2VnkHTxjHtdCafJlSJQS4pTQXkzZQoajlj7PtEn5zo3ueBQ7I1ot9Cw/s1600/Aidan6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihZ42DbhlFUgSkBUGZcxUu-JTDs2nqdCVN_FZ8DjsbtycYMGS4MJsQ3BydzInxN9RbblcCfX8NOfskSOg8AuKP2VnkHTxjHtdCafJlSJQS4pTQXkzZQoajlj7PtEn5zo3ueBQ7I1ot9Cw/s400/Aidan6.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little ham</td></tr>
</tbody></table>
<br />
<br />
Something new - because nighttime wasn't fun enough - a middle of the night wake-up to a hysterical boy claiming that "my mouth isn't right" and "I'm not my right size!" He was disoriented and confused and kept talking absolute nonsense. "I can't talk to you right!" "Please don't leave my body here!" "My throw up isn't going to work."<br />
<br />
Ugh. Awful. I hate not knowing what's going on. His blood sugar was fine, he had no fever, he was just disoriented and apparently nauseous. I hooked him up to a farrel bag, because what else is there to do, and he immediately drained some bile. That helped his nausea enough to convince him to take some melatonin and get back to bed, but no sleep for me. I don't know what happened, but it scared him enough to scare me. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu-8KOV72Eq8ZZi3fjKJqy56mCVUKCk8RHFSR8CPvqXmW5WkPayCXmCf06Wr8wS2j6HK1jCH5rFss9OSQ33_eD4ToZDozNROOiiKCN6GW32AVyXC6EOC_n0Jqs-zbMAXl4FEeJ4XakONE/s1600/Aidan4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu-8KOV72Eq8ZZi3fjKJqy56mCVUKCk8RHFSR8CPvqXmW5WkPayCXmCf06Wr8wS2j6HK1jCH5rFss9OSQ33_eD4ToZDozNROOiiKCN6GW32AVyXC6EOC_n0Jqs-zbMAXl4FEeJ4XakONE/s320/Aidan4.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sad little sicky...</td></tr>
</tbody></table>
<br />
Next week - Strides for Safe Kids (annual food allergy expo), Shopkins Swapkins event, Aidan's first soccer game, and his first feeding therapy appointment. Whew!</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-12601262365230334602015-09-04T12:56:00.003-04:002015-09-04T12:56:52.769-04:00Updates - Complex Care, Rare Care, and Besties<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a better week. I feel like I've accomplished more, anyway. I've made strides toward getting Aidan where he needs to be.<br />
<br />
The Diagnostic and Complex Care Team reviewed Aidan's chart and called to set up his consult with Dr. Magnusson. I don't know whether this means it's a visit to decide whether they'll take Aidan on, or it's the first step in the process of having Dr. Magnusson on our side. Either way, it's a step in the direction we so desperately need, and it isn't even that far off (October 23rd). I've heard truly amazing things about this doctor - that he's amazing to have on your side, that he's smart and he'll fight for you, get you what you need, and put you in your place when need be. All of that and more - and we need it all so badly. I'm looking forward to the appointment, but I also know that I need to seriously organize my thoughts before then. I need to be armed with a clear and concise history and how and where we need his help.<br />
<br />
I've also been continuing to talk with Children's Hospital of Pittsburgh's Center for Rare Disease Therapy (Rare Care). I am working with CHOP to gather Aidan's medical records, and once I have them and can get them to Rare Care, we'll be able to figure out exactly which doctors Aidan needs to see there. I've faxed the requests over to CHOP's records department, so now I wait. I have no idea how long it will take for CHOP to gather and mail his records to me. I'm oddly curious to see them, actually. But mostly, I'm anxious to get them to Rare Care so we can get the ball rolling. They have appointments available in November, but think that if we can get his records over quickly, they may be able to squeeze him in sooner. November would be great. Sooner would be amazing.<br />
<br />
All of this is so much more direction than we had even two weeks ago.<br />
<br />
On the home front, sleep has been hard to come by this week. I think Aidan's been sleeping more restlessly than usual - we've had two accidental unhookings overnight, and when we check on him overnight, he seems especially entangled lately. A few nights ago, we were all awoken at 4:30am to a low blood sugar, high ketone boy. He was cold and clammy and had been vomiting repeatedly in bed - all because his extension popped out and we fed the bed. Totally commonplace in the feeding tube world, but very dangerous for a hypoglycemic kiddo.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPLdPEzEdw66yJWg11GU-ke0KFJhV30gUkYJCoPNrGwqXCnNcRlmAG2gV-Ti3OXgjRpLhEGy32Ka_U8hgxWMG9EmvpO8NoYFTkNu9bhuY3rf6pu2kC8-qaJqQ-TBn1GONJP5onQbq-44M/s1600/sleeping.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPLdPEzEdw66yJWg11GU-ke0KFJhV30gUkYJCoPNrGwqXCnNcRlmAG2gV-Ti3OXgjRpLhEGy32Ka_U8hgxWMG9EmvpO8NoYFTkNu9bhuY3rf6pu2kC8-qaJqQ-TBn1GONJP5onQbq-44M/s400/sleeping.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This has to be a strangulation hazard - right?</td></tr>
</tbody></table>
On a fun note - Aidan got to spend time with his bestie over the weekend. It will never stop warming my heart to see him just get to <i>be a little boy</i>. These boys have so much to teach each other. I love that T pushes Aidan to try bigger, braver, better things. I love that Aidan shows T that it's okay for everyone to do things in their own time, at their own speed. I love that they can both learn how to meet a friend where he is, even if that's not where you are. T is a sweet boy with a sensitive heart who has loved Aidan like a brother since birth. We are so lucky to know him.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAtrII4u7GJItCC6XCzVZFUFegwMnirEXdtHkwtLvVGlZnGD_kxr8mMzRYuNaSWJ39U_OhmEx4DyksHOh_gGHZNgnvKv_1Rephm7WwVIOVLkJh4225MzvrN66LV9QcvESS2tNW9yb8CRs/s1600/tna.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAtrII4u7GJItCC6XCzVZFUFegwMnirEXdtHkwtLvVGlZnGD_kxr8mMzRYuNaSWJ39U_OhmEx4DyksHOh_gGHZNgnvKv_1Rephm7WwVIOVLkJh4225MzvrN66LV9QcvESS2tNW9yb8CRs/s400/tna.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Best Friends go with it when you rename their clubhouse "The Charmed House"</td></tr>
</tbody></table>
<br />
He also (creative boy!) had a great time making a robot that could do all of his smiling for him. Maybe I've been irritating him too much, asking him to smile for pictures? He was so proud of his robot's big smile, and said that now HE doesn't have to smile. Great problem-solving, little Vulcan. So proud :)<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNm3UxQdAUHxYcQFgkuGFpJF0NnyYnWtZdnprRidXvXq25FTiOIbX1McZljgb-VPugnLGXd2Z37FTW037I5ewXbktP6rvL-Kwp0EIRxEPkRM7Lj2wpZHr3cZiq7YFMw_wNVVwiOasCNm4/s1600/collage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNm3UxQdAUHxYcQFgkuGFpJF0NnyYnWtZdnprRidXvXq25FTiOIbX1McZljgb-VPugnLGXd2Z37FTW037I5ewXbktP6rvL-Kwp0EIRxEPkRM7Lj2wpZHr3cZiq7YFMw_wNVVwiOasCNm4/s400/collage.jpg" width="400" /></a></div>
<br />
<br />
All in all, it's been a better week. Over the next week, I'm hoping for more communication with Rare Care, a special Mommy/Aidan date on Labor Day, and my first time at a special needs parent support group - something that's been FAR TOO LONG in coming.</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-58895977077401992182015-08-28T16:44:00.000-04:002015-08-28T16:44:00.157-04:00New Ideas and Next Steps<div dir="ltr" style="text-align: left;" trbidi="on">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
</w:Compatibility>
<w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><br />
<!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:11.0pt;
mso-para-margin-right:0in;
mso-para-margin-bottom:0in;
mso-para-margin-left:0in;
mso-para-margin-bottom:.0001pt;
line-height:13.0pt;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Arial","sans-serif";
mso-ascii-font-family:Arial;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:"Times New Roman";
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Arial;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;}
</style>
<![endif]-->
<br />
<div class="MsoNormal">
I feel like things have been heading slowly but surely
downhill.<span style="mso-spacerun: yes;"> </span>Not for Aidan, really.<span style="mso-spacerun: yes;"> </span>Just for me.<span style="mso-spacerun: yes;">
</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As a mother, I feel like I owe him so much more than a
childhood full of fear and pain and “my body isn’t working anymore.”<span style="mso-spacerun: yes;"> </span>We are spending so much time managing <i style="mso-bidi-font-style: normal;">today</i> that I’m almost afraid to even <i style="mso-bidi-font-style: normal;">think</i> about the future – but if I don’t,
who will?<span style="mso-spacerun: yes;"> </span>And it’s a scary thought.<span style="mso-spacerun: yes;"> </span>If at age four, we’re already managing his
anxieties pharmaceutically, what will it look like at fourteen?<span style="mso-spacerun: yes;"> </span>If at age four, his body is too tired to
spend a day on his feet at the zoo or the amusement park, what will it look
like at forty?<span style="mso-spacerun: yes;"> </span>Why is it that he has the
appropriate skills to run, jump, and play – but not the energy required to
actually do it?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I look into his future and see nothing but the best and
brightest for him. He’s amazing.<span style="mso-spacerun: yes;"> </span>He’s
brilliant and quirky and funny.<span style="mso-spacerun: yes;"> </span>He’s
sensitive and sweet, and a charming mix of silly and puzzlingly serious.<span style="mso-spacerun: yes;"> </span>He will go to college and learn everything he
ever wanted to know.<span style="mso-spacerun: yes;"> </span>He will get a job
and do fantastic things for this world.<span style="mso-spacerun: yes;">
</span>He will meet someone who wants to spend their life figuring him out,
because with him, the destination will always be worth the ride.<span style="mso-spacerun: yes;"> </span>I know all of these things and I never, ever
doubt them.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I also know that it’s my job to get him there.<span style="mso-spacerun: yes;"> </span>It’s my job to keep him safe.<span style="mso-spacerun: yes;"> </span>To make sure he has a childhood as free of hurt
and fear as I possibly can.<span style="mso-spacerun: yes;"> </span>To make sure
that we’ve done absolutely everything to keep that silly “not working today”
body in check.<span style="mso-spacerun: yes;"> </span>Come <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">on</i></b>, little body!<span style="mso-spacerun: yes;"> </span>Aidan needs you!<span style="mso-spacerun: yes;"> </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu0L1fiGt7CgzsttkCKkTBPL7E_71ssIbCySxCE3drQQ9Z1DuW1OccQb4OzmmRxhw72kzVM-jWRwYb43hcOgVSnFbXrrb5wCnhUM2R6rl3QIuJrybX2ronrX5D6S5FkbK-zSxKQ8Iye_M/s1600/Aidan+Chair.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu0L1fiGt7CgzsttkCKkTBPL7E_71ssIbCySxCE3drQQ9Z1DuW1OccQb4OzmmRxhw72kzVM-jWRwYb43hcOgVSnFbXrrb5wCnhUM2R6rl3QIuJrybX2ronrX5D6S5FkbK-zSxKQ8Iye_M/s400/Aidan+Chair.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amazing kid... Tired body</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Over the past few months, we’ve seen new specialists who
have given us new (half) answers – a genetic mutation that may or may not be
causing some (but not all) of his problems.<span style="mso-spacerun: yes;">
</span>“It is likely there is another mutation not identified.” (Read: We know,
this doesn’t explain everything.<span style="mso-spacerun: yes;"> </span>We wish
we could help more.<span style="mso-spacerun: yes;"> </span>We’re sorry.)<span style="mso-spacerun: yes;"> </span>New meds to treat anxiety and attention
deficits.<span style="mso-spacerun: yes;"> </span>And they’re helpful, because
on any given day, we are doing more or less okay - but the overall picture isn’t
really improving.<span style="mso-spacerun: yes;"> </span>We have a child who
can’t eat anything.<span style="mso-spacerun: yes;"> </span>Can’t sleep.<span style="mso-spacerun: yes;"> </span>Requires hospitalizations far too often.<span style="mso-spacerun: yes;"> </span>Can’t stay hydrated despite our best
efforts.<span style="mso-spacerun: yes;"> </span>Can’t regulate his blood sugar.<span style="mso-spacerun: yes;"> </span>Can’t count on his own body to keep him going
all day long.<span style="mso-spacerun: yes;"> </span>Isn’t growing enough,
despite the best nutrition we can give him.<span style="mso-spacerun: yes;">
</span>It’s too much.<span style="mso-spacerun: yes;"> </span>Too much all
happening at once in a “healthy, normal child.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So it’s strict food avoidance.<span style="mso-spacerun: yes;"> </span>All feeds via J tube.<span style="mso-spacerun: yes;"> </span>Melatonin for sleep.<span style="mso-spacerun: yes;"> </span>More melatonin for wakefulness.<span style="mso-spacerun: yes;"> </span>Water flushes.<span style="mso-spacerun: yes;"> </span>More water flushes.<span style="mso-spacerun: yes;"> </span>More water flushes.<span style="mso-spacerun: yes;"> </span>Lots of wardrobe changes when he sweats out
all of the water we’ve flushed in.<span style="mso-spacerun: yes;"> </span>Blood
sugar checks every 3 hours.<span style="mso-spacerun: yes;"> </span>Inpatient
fasting before procedures.<span style="mso-spacerun: yes;"> </span>A special
needs stroller when his legs just won’t carry him any further.<span style="mso-spacerun: yes;"> </span>And therapy – so much therapy.<span style="mso-spacerun: yes;"> </span>OT. PT. Speech.<span style="mso-spacerun: yes;"> </span>Feeding.<span style="mso-spacerun: yes;">
</span>Behavior.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We’re told that this is what well-managed looks like.<span style="mso-spacerun: yes;"> </span>When the next problem arises, we’ll find
something to address that too.<span style="mso-spacerun: yes;"> </span>That’s
how you manage a child with “lots going on.”<span style="mso-spacerun: yes;">
</span>But, really, though?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So where do we go from here?<span style="mso-spacerun: yes;">
</span>What do we do?<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Today, I reached out to CHOP’s Complex Care team, in hopes
that they can help us.<span style="mso-spacerun: yes;"> </span>I don’t know if
they’ll take him on as a patient – I hope they do.<span style="mso-spacerun: yes;"> </span>We need more help.<span style="mso-spacerun: yes;"> </span>We need more answers.<span style="mso-spacerun: yes;"> </span>We need more avenues to explore.<span style="mso-spacerun: yes;"> </span>What is happening to this little body?<span style="mso-spacerun: yes;"> </span>How do we make it better?<span style="mso-spacerun: yes;"> </span>How do we make our lives better?<span style="mso-spacerun: yes;"> </span>If he’ll never eat normally, do we keep
pushing foods?<span style="mso-spacerun: yes;"> </span>For everything we do,
every decision and intervention we take, I want to know – <b style="mso-bidi-font-weight: normal;">will this make his life better?</b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I also reached out to another hospital (Children’s Hospital
of Pittsburgh).<span style="mso-spacerun: yes;"> </span>I have been thinking
about this for a long time, but actually doing it felt like staring up at
Everest while lacing up pink bunny slippers.<span style="mso-spacerun: yes;">
</span>Is this really doable?<span style="mso-spacerun: yes;"> </span>Am I
crazy?<span style="mso-spacerun: yes;"> </span>Maybe.<span style="mso-spacerun: yes;"> </span>But I’m not going to stop until I’ve gotten
him the best care I can.<span style="mso-spacerun: yes;"> </span>I hadn’t
considered them before because they don’t have a program for Eosinophilic
Disorders, but with this new genetic finding, I am hopeful that they may be
able to help us.<span style="mso-spacerun: yes;"> </span>Glycogen Storage
Diseases are among the conditions they treat in their Center for Rare Disease
Therapy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Very shortly after emailing the department, I connected with
the coordinator at the Rare Disease Center today, and talked through some of
Aidan’s history.<span style="mso-spacerun: yes;"> </span>I heard five of the
most encouraging words in the English language: <b style="mso-bidi-font-weight: normal;">I think we can help</b>.<span style="mso-spacerun: yes;"> </span>So now,
I work through gathering Aidan’s medical records and hopefully planning a trip
to Pittsburgh in the near(ish?) future.<span style="mso-spacerun: yes;"> </span>They
will help coordinate a place for us to stay while we’re there – there is a RMH
attached to the hospital, and some hotels nearby in case the RMH is full.<span style="mso-spacerun: yes;"> </span>The hope is that we can coordinate our visit
so that we see everyone we need to see while we’re there.<span style="mso-spacerun: yes;"> </span>Whether this would be “gathering ideas to
bring back to our CHOP team” or “starting with a new team altogether” – I don’t
honestly know.<span style="mso-spacerun: yes;"> </span>But the prospect of new
eyes on Aidan is encouraging.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know where this is all heading.<span style="mso-spacerun: yes;"> </span>I do promise, though, to keep you all better
updated as we figure things out and move forward.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP2zTaFyUblQA7Om3Kvh-PgQQImbZwzgS1mPkXP_zD_FMQ1sGV5Y3agKptc2P-tEWYuRrkTrusd_RV2Lb5LMi7K7zk7FDhAi1GbP6Q_l1_DGVdoKjTvVwLI9jASBlfGL6w8hdxJutEiVA/s1600/AidanCHOP.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP2zTaFyUblQA7Om3Kvh-PgQQImbZwzgS1mPkXP_zD_FMQ1sGV5Y3agKptc2P-tEWYuRrkTrusd_RV2Lb5LMi7K7zk7FDhAi1GbP6Q_l1_DGVdoKjTvVwLI9jASBlfGL6w8hdxJutEiVA/s400/AidanCHOP.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the face of insatiable curiosity. I think he gets it from Dad <3</td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-88180479667183937552015-08-25T21:05:00.001-04:002015-08-25T21:05:51.996-04:00All Of The Unfair - and why it's okay for me to whine about it sometimes<div dir="ltr" style="text-align: left;" trbidi="on">
Sometimes, life is unfair.<br />
<br />
It's the kind of thing you tell your kid when he <i>so desperately</i> wants that new toy, or so desperately wants <b>not</b> to eat that broccoli. You're the adult, and you know that he can't have exactly what he wants, exactly when he wants it. Life gets in the way, you need to buy groceries instead of toys, and you need to eat broccoli to grow big and strong. Sometimes, life is unfair.<br />
<br />
<br />
Picture, if you will, a little boy who loves Chuggington Trains. He loves them more than almost anything. I'd never ask him to choose between Mommy and Chuggingon Trains, because frankly, I don't think I'm emotionally prepared for his response. Chuggington is so immediately loveable for him, because the songs are easily memorized (ah, familiarity), the characters are clear and concise as they describe their thoughts and feelings (nothing ruins a good show faster than having no clue what's going on!), and the toys look just exactly like the trains on TV (there's our good friend familiarity again). Other little boys seem to like playing with them too, whether they're Chuggington fans or not, so they're a pretty universal social uniter. Aaaaand, the show doesn't make me want to insert ice pick A into brain stem B, like Thomas the Train does. Really, Chuggington for President. I digress.<br />
<br />
So there's a little boy who loves Chuggington, more than almost anything. As a special Christmas gift surprise, he got tickets to see <b>Chuggington Live</b> on stage with his Mommy. It was going to be a really special big boy Mommy/Aidan day, and since Mommy's not <i>insane</i>, Aidan wasn't told of the surprise until the day of. But boy, was he excited! Big, real Chuggers! No way! Let's go!!!<br />
<br />
Now picture, if you will, that little boy starting to feel sick. The drive to Chuggington is long, and as time goes by, the little boy feels sicker. By the time he arrives at the show, the sad truth is obvious. There isn't going to be any Chuggington today. There's just going to be a 75 minute drive to the Emergency Room, where he'll be poked and prodded while nervously asking if he can go see those Big Real Chuggers yet.<br />
<br />
Then, he'll go home, and get sicker. The next day, he'll go to the doctor, who will send him <b>back</b> to the hospital in a big, scary Ambulance. <i>This isn't Big Real Chuggers, Mommy. <b>I know, Baby. I'm so sorry.</b></i> More poking, more prodding. X-Rays, IV's, no sleep (we didn't even get admitted up into a room until 8am!), and certainly no Big Real Chuggers.<br />
<br />
<br />
And I get it. Really, I understand. Life isn't fair. I know how to say all of the right things to Aidan, to make him understand, and to help keep him from being an angry and entitled little urchin. But here's the thing - who's going to come explain it to me?<br />
<br />
Because <i>It isn't fair</i> that catching some plain old run-of-the-mill virus sends him to the hospital, and other kids wipe their noses on their sleeves and get on with their lives.<br />
<br />
<i>It isn't fair</i> that everyone is signing up to bring candy, juice, and cupcakes to this week's school party, but all my kid wants is to hug a banana. "<i>I won't eat it, Mommy. I promise. I just want to hug it. Please? I love that yellow guy so much."</i><br />
<br />
<i>It isn't fair</i> that everything that happens to him forces me to doubt whether I can care for my own child at home. While other parents wonder if if their kid is too sick for school or healthy enough to throw at the wall/hope it sticks, my brain is overflowing with phrases like <i>feed intolerance, elevated ketones, hypoglycemia, dysmotility, </i>and <i>direct admit</i>.<br />
<br />
<i> </i><br />
<i>It isn't fair</i> that my kid *just knows* that he wants the IV supply cart removed from his ER room before he'll set foot in there. Or that he chastises his nurses for using sanitizer instead of soap and water. Or that he requests specific toys from the floor's playroom, because he knows they're there. <i>It isn't fair</i> that all of this is so normal to him.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNa6NlrDrya0x6T5FS43CWcJ0HeZGgKM8dP_7MAI-Pgo3cmu1a9weaWOWjCA0CryAJfbNGMMCRglllNee9-AdZB4wb_ss2kSR6mVxZSyvw8g4xh2wecMzW-NvW6pCHJOQ9mZKEWtHXuo/s1600/go.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNa6NlrDrya0x6T5FS43CWcJ0HeZGgKM8dP_7MAI-Pgo3cmu1a9weaWOWjCA0CryAJfbNGMMCRglllNee9-AdZB4wb_ss2kSR6mVxZSyvw8g4xh2wecMzW-NvW6pCHJOQ9mZKEWtHXuo/s1600/go.jpg" width="298" /></a></div>
<br />
<br />
<i>It isn't fair</i> that he gets a cup of water and a spoon at the ice cream shop, while everyone else gets ice cream. "<i>Don't worry mommy, I can just pretend it's ice cream, because I love it!"</i><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRsjtPhCl874lrJxefn0HZZJCHJKP9N7pL5Gcf4GPPJ95OtQ45cXPzL7_kWRVQfbq7lVoy4YMBGwbcWaqN955Ez0rjSwYnlCav36vPTdwUYJ6sb0_JLU6MlPKtXKEQbjAR90OW___ZS8o/s1600/ice+cream.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRsjtPhCl874lrJxefn0HZZJCHJKP9N7pL5Gcf4GPPJ95OtQ45cXPzL7_kWRVQfbq7lVoy4YMBGwbcWaqN955Ez0rjSwYnlCav36vPTdwUYJ6sb0_JLU6MlPKtXKEQbjAR90OW___ZS8o/s1600/ice+cream.jpg" width="480" /></a></div>
<br />
<br />
<br />
<i>None of this is fair</i>. He deserves so much better than he gets. He doesn't really know how unfair any of it is - not yet, anyway. He knows that his
life is pretty great, and that he's loved, and that he's safe. He knows
that he has everything he could ever need, and most things things he's
ever wanted. Unfair, to him, is bedtime when he'd rather it was TV
time, going home instead of going to Target, and mom meaning <b>No</b> when she says No.<br />
<br />
<b>So I know</b>, these are all <b>my thoughts</b>, and not his. But you know what? That's okay. It's okay for me to hate the cards he was dealt sometimes. It's okay to say "How am I today? Not so good... This day is not so good at all..." There's no special trophy for pretending everything's just wonderful all the time. My little boy is brave, and and he's tough, but he shouldn't have to be - and it's A-OK for me to feel that way today..</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-46336356561607500982015-05-21T12:50:00.000-04:002015-05-21T12:50:02.695-04:00National Eosinophil Awareness Week - Day in the Life<div dir="ltr" style="text-align: left;" trbidi="on">
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
</w:Compatibility>
<w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><br />
<!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:11.0pt;
mso-para-margin-right:0in;
mso-para-margin-bottom:0in;
mso-para-margin-left:0in;
mso-para-margin-bottom:.0001pt;
line-height:13.0pt;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Arial","sans-serif";
mso-ascii-font-family:Arial;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:"Times New Roman";
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Arial;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;}
</style>
<![endif]-->
<br />
<div class="MsoNormal">
It’s National Eosinophil Awareness Week.<span style="mso-spacerun: yes;"> </span>I haven’t really done anything, but I’m
aware.<span style="mso-spacerun: yes;"> </span>Boy, am I ever aware.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A lot of families I know posted challenges on Facebook – <b>Eat
like an EoE kid for a day!</b><span style="mso-spacerun: yes;"> </span>They’re
accompanied by lists of foods that have to be avoided by their children (common
culprits like peanuts, soy, wheat, milk, eggs – and less common ones like apples,
potato, beef.)<span style="mso-spacerun: yes;"> </span>Others post lists of the
meager and incongruous groupings of things their children <b style="mso-bidi-font-weight: normal;">can</b> eat (tapioca, rice, turkey, blueberry) and urge their friends
and family to step into these shoes, just for a day.<span style="mso-spacerun: yes;"> </span>If you fail, donate $10 to Eosinophilic
Disorder research.<span style="mso-spacerun: yes;"> </span>If you don’t – think about
living every day this way – maybe donate anyway.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would never ask this of my friends or family.<span style="mso-spacerun: yes;"> </span>I’d never wish it on my worst enemy (okay,
maybe my <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">worst</i></b> enemy.)<span style="mso-spacerun: yes;"> </span>As you
know, if you know us at all, Aidan has no foods.<span style="mso-spacerun: yes;"> </span>None.<span style="mso-spacerun: yes;">
</span>Nothing.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you ask him, he’ll happily tell you that his favorite
snacks are <i style="mso-bidi-font-style: normal;">chocolate, pepperoni pizza,
and pretzels</i>.<span style="mso-spacerun: yes;"> </span>Those, he’s decided,
are really socially appropriate things to say.<span style="mso-spacerun: yes;">
</span>Sometimes he needs me to remind him what color chocolate is <b style="mso-bidi-font-weight: normal;">because he really doesn’t know</b>.<span style="mso-spacerun: yes;"> </span>Can you imagine?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
While other families are drilling their preschoolers on
stranger danger, Aidan is learning to be strong and assertive when someone
tries to offer him a snack.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">No, I have allergies!<span style="mso-spacerun: yes;"> </span>No, I can’t have that!<span style="mso-spacerun: yes;"> </span></i><b style="mso-bidi-font-weight: normal;">Just.
Say. No.<span style="mso-spacerun: yes;"> </span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, okay, I won’t ask that you live a day in his life.<span style="mso-spacerun: yes;"> </span>But close your eyes for a minute and think
about it.<span style="mso-spacerun: yes;"> </span>As your friends and family
enjoy their snacks and meals, you can have a cup of water.<span style="mso-spacerun: yes;"> </span>You can’t sit too close to anyone who might be
eating – that wouldn’t be safe for you.<span style="mso-spacerun: yes;">
</span>You can’t play with any toys or work on any crafts with food ingredients
(sorry, Play Doh!) – not safe.<span style="mso-spacerun: yes;"> </span>No soaps,
lotions, or shampoos with “all natural” ingredients like fruit extracts or shea butter – might as well just say “all deadly.”<span style="mso-spacerun: yes;"> </span>As you go through your day tomorrow, think
about how different it might be if food – everything that <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">is</i></b> <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">food</i></b> or <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">has</i></b>
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">food</i></b>
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">in
it</i></b> had to go.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Isn’t it all the more impressive that <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">this guy</i></b> does it all with
a smile?</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2pz3GG4Ej3nCNJRkv0AM2cTltjiLj5SBIl6kXYzKlVx2MT3Z4hoVKeLpn6X5qQBKZcpdvuVyPQYT8x8jaA1U5o_DGN8BWcYPAJLi2mWWs3p3mkJmNfYfUv-CqZDZf0Gg7pxMfKHuJias/s1600/smile.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2pz3GG4Ej3nCNJRkv0AM2cTltjiLj5SBIl6kXYzKlVx2MT3Z4hoVKeLpn6X5qQBKZcpdvuVyPQYT8x8jaA1U5o_DGN8BWcYPAJLi2mWWs3p3mkJmNfYfUv-CqZDZf0Gg7pxMfKHuJias/s400/smile.jpg" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-21532143008476973922015-04-03T21:50:00.000-04:002015-04-03T21:50:19.803-04:00Checking In...<div dir="ltr" style="text-align: left;" trbidi="on">
Sometimes, so much time passes since I last wrote, I feel like I should have something monumental to say. But I don't, so I don't say anything at all, and then you don't hear anything from us until something awful happens.<br />
<br />
<b>Nothing awful has happened</b>. <br />
<br />
We're still here, taking things one day at a time and trying to keep it all in perspective when I think it's all too much.<br />
<br />
We finally completed a sleep study in January (dreadful) and determined that, although he wakes up at least ten thousand times every night, it's not a respiratory problem. Obviously great news from a pulmonary perspective, though not the most helpful thing to hear from a "let's get this kid snoozin'" point of view. But we've started using Melatonin with some success, so we're at least moving in the right direction.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMsRDs635HunPqotQGFZEZMRzRL0pq19O9cgaGubbTpPpE-ITpQNFyMzZ53AvIZTEZPBDKHfKOfyrn69xxZBe4KQpMWCCrWC0uWRrzN26n0DaJXA0moEFlrdp88v_t3spNO5ElaDWjDxo/s1600/sleep.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMsRDs635HunPqotQGFZEZMRzRL0pq19O9cgaGubbTpPpE-ITpQNFyMzZ53AvIZTEZPBDKHfKOfyrn69xxZBe4KQpMWCCrWC0uWRrzN26n0DaJXA0moEFlrdp88v_t3spNO5ElaDWjDxo/s1600/sleep.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hi, I'm checking in for my Awake Study?</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7oGb5U3lWx4WRZcLqIRTINW8GGdG3K8kZSFRawz5nSO6Q3JsE28J2xhqZtYiqgp9b47tPjavJPftJrR_RWvAED7zYc2oly0OtRp1gqC4fTbSN1iuganSqU6r_LFGoRDWQ3WC__7bS2QA/s1600/sleep2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7oGb5U3lWx4WRZcLqIRTINW8GGdG3K8kZSFRawz5nSO6Q3JsE28J2xhqZtYiqgp9b47tPjavJPftJrR_RWvAED7zYc2oly0OtRp1gqC4fTbSN1iuganSqU6r_LFGoRDWQ3WC__7bS2QA/s1600/sleep2.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleep is for losers...</td></tr>
</tbody></table>
Aidan spent some time inpatient in February with a GI virus that he picked up (probably at school) and I went to a very dark place. Parents of healthy children aren't living this life, and I hope they never have to. (Just like *we* aren't living the lives of NICU and PICU families, or Cancer families, and hope beyond hope we never know their "normal.") But the GI virus that sends a classmate home early one afternoon for some extra rest and fluids sends Aidan to CHOP by ambulance (inpatient for 4 days, home for 4, inpatient again for 5), leaves him on anti-emetic medication for weeks to combat constant vomiting because the virus disrupted his motility, and steals away all of the weight he'd gained since October. And I'm so <b>angry</b> because it's so <b>unfair</b>. But that's another topic for another day.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilAAwNHa-IE8Y59r_zmJ-NlN9Ias0iCpXr0s7a6TbE99fTUXHkU6Na_qifharLeaSH7NV0JIkGW_oCyF3zEkRor3Kq1AaUXg-zNW0cQfaBpoRalaapV1H0-ZEi_z30IrW7hNCeS1WUXFg/s1600/ambu.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilAAwNHa-IE8Y59r_zmJ-NlN9Ias0iCpXr0s7a6TbE99fTUXHkU6Na_qifharLeaSH7NV0JIkGW_oCyF3zEkRor3Kq1AaUXg-zNW0cQfaBpoRalaapV1H0-ZEi_z30IrW7hNCeS1WUXFg/s1600/ambu.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I'm sick, but ambulances are awesome!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0PfRzRLj9VJJ0Bh8d5bAFlu6eLr23B2XAaTiNEhqoSjOr_USmeJ7EAkMcS1y5X5Kx5Hst2vyq2SpkBe4hagDPLFNAnLkuh0xfoHkGVrS9wBbAWBNBpDrY2ynP50yuGO9H1KNxrq8XzxM/s1600/hosp.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0PfRzRLj9VJJ0Bh8d5bAFlu6eLr23B2XAaTiNEhqoSjOr_USmeJ7EAkMcS1y5X5Kx5Hst2vyq2SpkBe4hagDPLFNAnLkuh0xfoHkGVrS9wBbAWBNBpDrY2ynP50yuGO9H1KNxrq8XzxM/s1600/hosp.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A boy and his bucket</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMaEUULi1E1sMYXBZYhsh1tF2YwgN4CsXDYU3ROB6NfOerJLFDCocpp8xnIwqQO8LIkwSGI6ezZE-eCnIL1FQvkfzrEqImoqghP4NRD60VCKItGlRUlqLiM4t4PQT0VGhGseb6owNP0wA/s1600/window.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMaEUULi1E1sMYXBZYhsh1tF2YwgN4CsXDYU3ROB6NfOerJLFDCocpp8xnIwqQO8LIkwSGI6ezZE-eCnIL1FQvkfzrEqImoqghP4NRD60VCKItGlRUlqLiM4t4PQT0VGhGseb6owNP0wA/s1600/window.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">His wife will thank me for this later...</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiatBnhzt6mSfe4LkUMCFTQDuckdtTX9VpkOG1bWm5Jn39exTm9fPZzCNSabgkbkd3e_Ydx8wWn1TjDHev0vw7yTslpDjlBgvGcI8KOz2Y0QR-tnKiL7iD9TkN4vFu9oRCmFJN7SywQ3zM/s1600/doctor.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiatBnhzt6mSfe4LkUMCFTQDuckdtTX9VpkOG1bWm5Jn39exTm9fPZzCNSabgkbkd3e_Ydx8wWn1TjDHev0vw7yTslpDjlBgvGcI8KOz2Y0QR-tnKiL7iD9TkN4vFu9oRCmFJN7SywQ3zM/s1600/doctor.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">FINALLY time to go home!</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPpQe9lWodadk_0dR3vtPQ_-QkpVbXqSbxujOfsuHi90ESwjk82j2-CiYqnqM2weM205T7DU-E1kwxWpOitj25pK9mJ-arNIGMadgFOW9sge_m8N_CYLsdhqqDX_hmbIBA2NIG4f5NPQA/s1600/chop.jpg" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPpQe9lWodadk_0dR3vtPQ_-QkpVbXqSbxujOfsuHi90ESwjk82j2-CiYqnqM2weM205T7DU-E1kwxWpOitj25pK9mJ-arNIGMadgFOW9sge_m8N_CYLsdhqqDX_hmbIBA2NIG4f5NPQA/s1600/chop.jpg" height="400" width="298" /></a></div>
<br />
<br />
We checked in again with Endocrinology when the madness that was our inpatient stay(s) wrapped up, and were pretty soundly brushed off. Aidan has good weight gain and poor linear growth, but our endocrinologist is generally unconcerned and feels there's really nothing to be done. At this point, her only concern for him is his Ketotic Hypoglycemia, so she's referring him over to her colleagues on the Hypoglycemia team. <br />
<br />
March brought new focus to Aidan's Developmental concerns. I think sometimes, it takes a really forceful nudge - just the right person saying just the right thing - to get ready to change your approach. In our case, it was Aidan's Psychologist and his Behaviorist. Tom and I both really respect them, and when we met for our tri-annual review, we all talked through some new things that we hadn't really discussed before. I think this is going to lead to some different approaches to Aidan's behavioral interventions. Stay tuned on that.<br />
<br />
The next few months should be interesting, as always - in April, we will be seeing orthopedics to check in on Aidan's legs and feet, Developmental Pediatrics to review our new plans and services for Aidan, and he'll be heading inpatient on the 20th for his GJ change on the 21st. In May, we head to Metabolism for the first time, and we meet with an Endocrinologist from the Hypoglycemia team. In June, back to Developmental Peds. And somewhere in here will be a first visit to CHOP's Genetics department, since we've only ever seen genetics once at another hospital, and everyone agrees this is something that needs to be revisited. His case is currently under review, and we should hear back within the next few days regarding which doctor will see him and when.<br />
<br />
In the meantime, we're doing all of the usual stuff. Aidan's going to a new school and is doing well there, especially now that we've added full time private duty nursing (Bayada has been a <b>huge</b> positive addition to Aidan's team). He's still getting lots of therapy and making amazing strides with his speech and motor delays. He started Karate in January, and holy smack, does he ever look adorable!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjawjtdKMc5-fpm6B7mYeIIPcedsvtivLjGGhn-M0dgo2PxD5kad_nsxy-Feg_4qRY7_KEu3ViHoNWeQrHeUeknve2nFABMPsQi0IWbj5a32C3jL9YPe1zn8-qeLqGyBpmL_ApocxJKCmU/s1600/karate.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjawjtdKMc5-fpm6B7mYeIIPcedsvtivLjGGhn-M0dgo2PxD5kad_nsxy-Feg_4qRY7_KEu3ViHoNWeQrHeUeknve2nFABMPsQi0IWbj5a32C3jL9YPe1zn8-qeLqGyBpmL_ApocxJKCmU/s1600/karate.jpg" height="400" width="298" /></a></div>
<br />
More to come, soon I hope, but for now, know that we do appreciate every single time you reach out to check in. We're still alive, and sometimes I need a little (big) nudge to dig out from under 10,000 pounds of life to return your call (text/email/attempt at actual verbal communication).<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-50502528133267166512015-02-16T01:05:00.001-05:002015-02-16T01:05:52.168-05:00Feeding Tube Awareness Week 2015<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtUkKSH7Ivtup3XrKEDcqwnOCYnJFLamwjFN2Q2eUGs5rqMZ6JmzDt_OKcAOiCOsH2PQWHSoZnzG0YOZNbRFPMMkIT-CkberNG2jDSCJdVFoDh3sMzuvt_VWq8dH98_AO8BnG8bgLosPw/s1600/FTAW.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtUkKSH7Ivtup3XrKEDcqwnOCYnJFLamwjFN2Q2eUGs5rqMZ6JmzDt_OKcAOiCOsH2PQWHSoZnzG0YOZNbRFPMMkIT-CkberNG2jDSCJdVFoDh3sMzuvt_VWq8dH98_AO8BnG8bgLosPw/s1600/FTAW.jpg" height="300" width="320" /></a></div>
In a perfect world, I would have had a lovely post queued up every day last week, in honor of Feeding Tube Awareness Week. Didn't quite happen. <br />
<br />
Each year, the Feeding Tube Awareness Foundation suggests daily talking points and activities throughout Feeding Tube Awareness Week - I'd really like to take the opportunity to share my thoughts this year. I'll try to be brief, I totally almost promise.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeoI786MFrO9Utovo47wYE75rCR9G1cHXLvGIPT5cpPof_EGBfxLrTIFLcuUWZprdfHHaeHxtwuIINsbwEt1i4PBSmwnktdl4KcnKu97RuPJpiaoUPGLwcUGRQh-CtPYFm59DNGYQDFgo/s1600/Ilove.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeoI786MFrO9Utovo47wYE75rCR9G1cHXLvGIPT5cpPof_EGBfxLrTIFLcuUWZprdfHHaeHxtwuIINsbwEt1i4PBSmwnktdl4KcnKu97RuPJpiaoUPGLwcUGRQh-CtPYFm59DNGYQDFgo/s1600/Ilove.jpg" height="320" width="320" /></a></div>
<br />
<br />
<i><b>Why is Aidan tube fed?</b></i><br />
<br />
What a question! I'm sure I've tackled this one before, but the short answer is that he doesn't have any safe foods to eat, so he needs to drink a special hypoallergenic formula. The formula doesn't taste good, and Aidan started refusing to drink it when he was about a year old. We spent most of our waking hours begging, pleading, and trying to force him to drink even the tiniest amount. I can remember just before he got his first feeding tube, taking stock of his intake and realizing he was getting about 4 ounces of formula in a day. <b>Four</b>.<i><b> </b></i>Think a child can grow/thrive/develop on 120 calories per day? I don't. And he wasn't.<br />
<br />
Things got more complicated as he got older and we learned more about his medical issues, but since I totally almost promised to be brief, that's the short version and I'm sticking to it!<br />
<br />
<i><b>What does this week mean to us?</b></i><br />
<br />
More than anything else, Feeding Tube Awareness Week means <i>Getting the Word Out</i>. The more we all talk about it, and the more photos we all share, the less noteworthy it becomes. This is why I love small children - they ask their questions, think for a moment, and then say - Okay! And it's just accepted. It's him, it's part of him, and everyone's fine with it. I'd love to see the rest of our society get there too.<br />
<br />
<i><b>Addressing the Myths</b></i><br />
<br />
There are so many myths. I'll pick a few of my favorite.<i><b> </b></i><br />
<br />
<b>Feeding Tubes are for the elderly/extremely sick/very fragile. </b>Feeding tubes are for people who need them - period, end of story. Some of those people are elderly, or sick, or medically fragile. Some of them are young and pretty healthy, but need more intake than they can handle orally. A lot of them are in between - children and adults with medical issues that, for one reason or another, need a feeding tube. Only slightly different from the rest of us, children and adults with various medical issues that don't happen to need feeding tubes.<br />
<br />
<b>He looks way too healthy to have a feeding tube! </b>I'll take this as a compliment, and pass it along to his medical team. We're all working really hard for exactly this end result, so thanks for the positive feedback! Just as I don't stop putting gas in my car when I notice it's running really well, I won't be stopping tube feeds based on your feedback that they seem to be working. That would be crazy business.<br />
<br />
<b>My child is too active to deal with a feeding tube. He couldn't possibly handle continuous feeds. </b>I know, this one sounds so true. Actually *getting* a feeding tube for the first time sounds like the most life-limiting thing ever. How will anything ever be okay again? And when you're dealing with the reality that your child will be on continuous feeds (Which are not always 24 hours continuous - for example, we once had an 18 hours on, 6 hours off schedule for Aidan), it feels crushingly like he'll never have the life that a child deserves - but it's <b>just not true</b>. My own crazy 4 year old is now a 24 hour continuous feeder, and he attends a typical Pre-K and takes Martial Arts three times per week. He's also done Gymboree Classes, Soccer, and has been safely fitted to wear a rock climbing harness while wearing his feeding pump in a backpack. Tubies swim, run, and roughouse like any other kid. And, for what it's worth, an actual 24 hour continuous feed schedule is really uncommon. <br />
<br />
<b>Bring him to my house, I'll make him drink that formula. </b>Bring your face to my house. I'll smack it. <br />
<br /><b>I can't do this. </b><i><b> </b></i>You totally can. It's overwhelming, yes. It's maddening. It's exhausting. But so was new parenthood, and you're doing fine there. You don't need to be a doctor or a nurse to care for your Tubie. You will know your Tubie better than any doctor ever will. On your twentieth admission to the same floor, the same doctors will start asking you what you'd like to do next. You are going to be the world's leading expert on your Tubie, and don't you forget it! You've <b>got</b> this! <br />
<br />
<i><b>Educate!</b></i><br />
<br />
You may have noticed, Education is kind of a personal mission of mine. I truly believe that if more people actually understood a day in the life of a Tubie, the world might be just a <i>tiny</i> bit better off for it. At the very least, it would be more mindful and accepting of this particular difference.<br />
<br />
My favorite educational tools, since I focus my efforts on my son's Pre-K peers, are the <a href="http://www.amazon.com/My-Tubey-Day-Life-Tube/dp/1460964659/ref=sr_1_5?ie=UTF8&qid=1424064643&sr=8-5&keywords=my+tubey+books">My Tubey books</a> and <a href="http://www.tubiefriends.com/">Tubie Friends</a>/<a href="http://www.facebook.com/myminibuddy">Mini Buddy</a> stuffed animals. Feeding Tube Awareness provides some awesome printable guides, which I like to have nicely printed and coil bound for new teachers/caregivers, and nothing beats being able to bring an actual spare tube to show people what's what.<br />
<br />
When it comes down to it, people are visual. Being able to see and touch things goes a long way toward demystifying them.<i><b> </b></i><br />
<br />
<i><b>Celebrate Success!</b></i><br />
<br />
When Aidan was tiny and new, like every new mom, I promised him that I'd give him everything he needed. Food. Shelter. Love. Fisher Price. You know, the essentials. As he grew (or didn't...), I realized that his body was failing him and preventing <b>me</b> from keeping that promise. I made the only decision I possibly could have - the one that gave him <i>everything</i>. Without nourishment and hydration, everything else is irrelevant. This tube gives Aidan the opportunity to go out and conquer the world, or stay in and play with Legos. Whatever he does, he's bound to succeed because of the choices we made for him three years ago. And, you know, I think that's something to celebrate.<br />
<br />
<i><b>Feeding Tube Fun</b></i><br />
<br />
A little feeding tube humor for you. In our household, talk of feeding tubes is (obviously) just regular everyday fare. Aidan knows so much medical terminology, I sometimes wonder if he's Pre-Med or Pre-K. (Paying his tuition isn't really clearing things up any...) Last week, we had to take our cat to the Vet for a checkup, and the tech needed to ultrasound the cat's tummy. Aidan angrily confronted the tech, and said "No! You stop it! You do not check his belly with x-rays, because he does not have a tubie!" When I told him that it was okay, the Kitty Doctor was just helping, he looked at me <i>and I swear he rolled his eyes in my general direction</i> and said "No, Mommy. She's not a Kitty Doctor. She's a GI because she's fixing up Stormy's tummy." <br />
<br />
Well <i><b>I</b></i> laughed.<br />
<br />
<i><b>Tubie Love</b></i><br />
<br />
I <b>love</b> that Feeding Tube Awareness Week overlaps with Valentine's Day. It's so meaningful and so important to us, and while it's not always easy, I absolutely <b>love</b> this feeding tube, because it has allowed Aidan to be the normal and healthy little boy that he is. This is something to celebrate - to shout from the rooftops!<br />
<i><b> </b></i><br />
To spread our love this year, Aidan and I made Valentines for his new classmates. We were happy not to have to redesign them, since he recently moved to a new school with all new friends, so no one had seen this Valentine before. We added his TinySuperheroes card (because it's super cool and gives a little bit of background on who he is and why we didn't just hand out Ninja Turtles Valentines and call it a day), and we also gave out Feeding Tube Awareness tattoos because 4 year olds think tattoos are super awesome. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI4BM7fq7z4CyBg0vJSodZLt9QXLQ9F4Uhm49ap4-qztQnL2ZLrFsMw2VeOFK0iFp0D20sHW6Ir0MrbI0Znm9E3s3X8vkx24Mj9fDvBE4HWQlzaNFuNYBA283PwO0ZjqVDZNVCS7Bx-tA/s1600/Valentines2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI4BM7fq7z4CyBg0vJSodZLt9QXLQ9F4Uhm49ap4-qztQnL2ZLrFsMw2VeOFK0iFp0D20sHW6Ir0MrbI0Znm9E3s3X8vkx24Mj9fDvBE4HWQlzaNFuNYBA283PwO0ZjqVDZNVCS7Bx-tA/s1600/Valentines2.jpg" height="320" width="260" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTXJdRsFJ38cxgr4dj6tfZke6FSARVurbp54TOPqTswFPz0o6cS8otcB6M4NrxhY8sVEOMxu4Zfs2naD9QHy57lEx0NMX_aARviQwGRbi6rm5meEgDPwymdGJGUzreX1fzMbFHOzKe6Ww/s1600/Valentines.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTXJdRsFJ38cxgr4dj6tfZke6FSARVurbp54TOPqTswFPz0o6cS8otcB6M4NrxhY8sVEOMxu4Zfs2naD9QHy57lEx0NMX_aARviQwGRbi6rm5meEgDPwymdGJGUzreX1fzMbFHOzKe6Ww/s1600/Valentines.jpg" height="320" width="239" /></a></div>
<br />
<br />
<br />
In closing, I'll share the photo collages I made this year. Because holy smokes, he's cute.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvhPh8D_V4kByz9e-xxvHdJDBiaHxdE1UJyBz0egGHnqWrpg_Tn8LFMd1oq7J79pMmF40wABWxqFdYxxL9fuFLOxeXURX0krW_AsAQB-5JUBLfVhjffhEC7rxUPKw9AA2r-QYQW1IrZWs/s1600/FTA1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvhPh8D_V4kByz9e-xxvHdJDBiaHxdE1UJyBz0egGHnqWrpg_Tn8LFMd1oq7J79pMmF40wABWxqFdYxxL9fuFLOxeXURX0krW_AsAQB-5JUBLfVhjffhEC7rxUPKw9AA2r-QYQW1IrZWs/s1600/FTA1.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">NG Tube - placed April 15, 2012. Aidan was about 15 months old and had the NG Tube for 6 weeks.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWjlmbzZnSDsJmU6-sEuPOqIomB8tNoJYAwsqiOlz0KH1QEdZ0jGAWgnXyXs8JYy927j5ul0G2hF0BpXPu913Qweqyr4g4AyXt8DYL2UTuDggXn3qBt7PlYCSBJDsvdHmFtV90FfoqKA/s1600/FTA2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLWjlmbzZnSDsJmU6-sEuPOqIomB8tNoJYAwsqiOlz0KH1QEdZ0jGAWgnXyXs8JYy927j5ul0G2hF0BpXPu913Qweqyr4g4AyXt8DYL2UTuDggXn3qBt7PlYCSBJDsvdHmFtV90FfoqKA/s1600/FTA2.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PEG G Tube - Placed May 31, 2012. Aidan was about 17 months old and had the PEG for about 4 months.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBo5C2DZVkN4ak2i5a0O0E2UAB4-Q_CmQK2LAvJ-0aZt7zrwCqoJl2kgLxKCq_5jMSIk7Jo5RDIrEdK3N7haXkfIuGch8HgTH-D7F5gGZwNPW8Jd-bMysdB3cpUlyxMHBWPOU3ZVT5WEU/s1600/FTA3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBo5C2DZVkN4ak2i5a0O0E2UAB4-Q_CmQK2LAvJ-0aZt7zrwCqoJl2kgLxKCq_5jMSIk7Jo5RDIrEdK3N7haXkfIuGch8HgTH-D7F5gGZwNPW8Jd-bMysdB3cpUlyxMHBWPOU3ZVT5WEU/s1600/FTA3.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Buttons! Aidan's first button was a G-Tube, placed on October 5, 2012. Aidan was 21 months old and kept that tube for 6 months (with changes). Aidan's next button was actually a GJ Tube, placed on April 2, 2013 when Aidan was 27 months old and I should have stopped counting in months forever ago. In 2015 at age 4, he still has a GJ button.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpmCUi6xnozYTuhCpTVgb2QIVI19KiokDcgsGnCKqquFoYHJwMNRyZl1KXI1sj3wuvLvjmNgJxydOs8cZo_PqKTtOy1sCDVlZ03sKGE3FlFysHDJKy_EAD_n8IDY0zjajL58JEDKUNufk/s1600/FTA4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpmCUi6xnozYTuhCpTVgb2QIVI19KiokDcgsGnCKqquFoYHJwMNRyZl1KXI1sj3wuvLvjmNgJxydOs8cZo_PqKTtOy1sCDVlZ03sKGE3FlFysHDJKy_EAD_n8IDY0zjajL58JEDKUNufk/s1600/FTA4.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Purely for fun. Way back in the day, when he had a G tube, Aidan tolerated gravity bolus feeds by syringe. Now, he's all pump, all the time.</td></tr>
</tbody></table>
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-3699804631803605922015-01-22T22:30:00.000-05:002015-01-22T22:30:44.712-05:00Tube Change - January 2015<div dir="ltr" style="text-align: left;" trbidi="on">
January found us inpatient for a tube change (I can't believe it's already been three months!). It's been a tough month for Aidan for a number of reasons, so I wasn't sure how this hospital visit would go, but they're certainly not optional, so off we went.<br />
<br />
This was an important visit for Aidan. For starters, it was his first hospital stay where he used a hospital <b>bed</b> instead of a crib. Maybe it was a bigger moment for me than for him, but seeing him in that bed was such a morale-booster. This time last year, we weren't sure he'd ever understand that he couldn't just wander out of a bed while attached to his IV pole. The safety awareness just wasn't there. He's made so much progress, and something like this is a real, tangible sign of that progress. Oh, and also, glorious, glorious legroom!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqXlx2iTv-ckZYZD65IpmxKTy43AQvHTuFCAHq9n-_55DdCgbiuaPAWOeffKCxejR1-pVjO49mj80VxZbkTXK2PMWlctcqBO9CHUuOQTH1AWuTzot4U2QaacqT3b8Lavina4iRLsqqX4E/s1600/Jan15-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqXlx2iTv-ckZYZD65IpmxKTy43AQvHTuFCAHq9n-_55DdCgbiuaPAWOeffKCxejR1-pVjO49mj80VxZbkTXK2PMWlctcqBO9CHUuOQTH1AWuTzot4U2QaacqT3b8Lavina4iRLsqqX4E/s1600/Jan15-1.jpg" height="297" width="400" /></a></div>
<br />
<br />
Anyway, when we settled in on Tuesday night, Aidan kicked things off by having random rashes pop up that scared the crap out of me. He was fine when we arrived, and of course (just to freak me out), they only started appearing when I started eating my (non-fish) sushi. He didn't eat it, he didn't touch it, I didn't touch him. But the same thing happens to him pretty frequently out in public - mall food courts, restaurants - it's hard to believe it's not food-related, you know? <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Z7YSTGgmkezYtHETEJIxyPGjILL7TOR6JmYP337ZDF4r7WAmnXNw6Xl_XQLQczNdqbEZLIpsXvYEKRepQ-eFBjRtVlAal-LiXg_cb06g1Fg42A1hivUgXkMuKdJRstjpLB6EYwMpBy4/s1600/Jan15-2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2Z7YSTGgmkezYtHETEJIxyPGjILL7TOR6JmYP337ZDF4r7WAmnXNw6Xl_XQLQczNdqbEZLIpsXvYEKRepQ-eFBjRtVlAal-LiXg_cb06g1Fg42A1hivUgXkMuKdJRstjpLB6EYwMpBy4/s1600/Jan15-2.jpg" height="239" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little rash on his back - okay, no biggie...</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz5x68FH_s7LrSCLHk0L5ZiiSJUFYlxsuaCc6VpjB9ql1RXxEqjCyyMmx5PU1HG1dzWDRLDM4wC2tTexVt6jW18Ehg8sgNgpe9WvwEjWdxdTyhcpqZom82itXxxcSJvADV6W5w6zaBJ6o/s1600/Jan15-3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz5x68FH_s7LrSCLHk0L5ZiiSJUFYlxsuaCc6VpjB9ql1RXxEqjCyyMmx5PU1HG1dzWDRLDM4wC2tTexVt6jW18Ehg8sgNgpe9WvwEjWdxdTyhcpqZom82itXxxcSJvADV6W5w6zaBJ6o/s1600/Jan15-3.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And this thing on his chest - okay, I can see how this might show up...</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrqX-R9PY9I037E6aVb6rfk1xN8osEUw8-t4hJIhkB-hEst77YYCQFq8Fbli6hxTzEnfLV9eAUPcSKXu0BN8tNw3xtDzpK0nKnH7pUmzNYnUjLUzkLjO5LvJxE9VuT5Z4fRa5FNnovK2Y/s1600/Jan15-8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrqX-R9PY9I037E6aVb6rfk1xN8osEUw8-t4hJIhkB-hEst77YYCQFq8Fbli6hxTzEnfLV9eAUPcSKXu0BN8tNw3xtDzpK0nKnH7pUmzNYnUjLUzkLjO5LvJxE9VuT5Z4fRa5FNnovK2Y/s1600/Jan15-8.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little tummy itchies, no big thing...</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokz14QuhocmKZc7uqgMby1uAsbx3uR3Z6LH0PzzQDd72aRuNmjZNRijmiHR9doa9e3TpYsM2SfcSvprr5YUmpf12zz6sd1PkXZ_8OfFnHEFyRo09kQtBA2AFiyp6c4e_Fcum02JM2GOo/s1600/Jan15-4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhokz14QuhocmKZc7uqgMby1uAsbx3uR3Z6LH0PzzQDd72aRuNmjZNRijmiHR9doa9e3TpYsM2SfcSvprr5YUmpf12zz6sd1PkXZ_8OfFnHEFyRo09kQtBA2AFiyp6c4e_Fcum02JM2GOo/s1600/Jan15-4.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">GAH! What happened to his face!</td></tr>
</tbody></table>
<br />
<br />
Oddly, we were up on 4 East, which is surgical/trauma, instead of 5 South (GI). His paperwork was processed as a G-Tube initial placement instead of a GJ change, which was... interesting to sort out. 4 East is not my favorite place to stay - the rooms are shared, which is always kind of awkward when you have a screamer. I hate feeling horrifyingly guilty about my kid freaking out while some other poor kid is trying to rest and recover from his hideously painful testicular torsion.<br />
<br />
Anyway, we had the usual drama around IV placement - four fails before we finally got one in. Aidan's gotten fantastic at sounding unspeakably sad and accusatory. "Why did you just hurt me, doctor?" "Please stop with the ouchies!" After much ado, we got the IV in and fluids started. I gave Aidan his reward - a new Chugger - even though he admitted that he "wasn't brave because he just cried and whined and said ouchie". Still brave, kiddo. Still brave.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWvOMmf0vivk8Y3TIKv6WdWlp7QfhJhgkhtrUEiHv5EnLYS5843JOB2NSsmY85YxaXr58ZjrjVkiXNCSn78NRQQJ1PN97TGBsnoxrIP1mRs5tpZDIqSup9SKMFFIOlXcDadqr_Ug4UiJ8/s1600/Jan15-5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWvOMmf0vivk8Y3TIKv6WdWlp7QfhJhgkhtrUEiHv5EnLYS5843JOB2NSsmY85YxaXr58ZjrjVkiXNCSn78NRQQJ1PN97TGBsnoxrIP1mRs5tpZDIqSup9SKMFFIOlXcDadqr_Ug4UiJ8/s1600/Jan15-5.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sad boy, warm flippers</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvvgSCNG1uygyvPu0EKk6dj-BZ2fB5hDD9nL9kB2cxGM_5N1ZUaUCupJBworHVSigfcffsaK709edyI7YdbFCuksjLNpVoxFmY59zK8HTw8APeicxsCEH3pmib-feRBN6NpoM6ezBXHAk/s1600/Jan15-6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvvgSCNG1uygyvPu0EKk6dj-BZ2fB5hDD9nL9kB2cxGM_5N1ZUaUCupJBworHVSigfcffsaK709edyI7YdbFCuksjLNpVoxFmY59zK8HTw8APeicxsCEH3pmib-feRBN6NpoM6ezBXHAk/s1600/Jan15-6.jpg" height="298" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drama's over, new train on board</td></tr>
</tbody></table>
First thing Wednesday morning, Aidan and I went down to IR, and the real fun got started. He coughed - I'm not even joking here - <i>ONE TIME</i> in the elevator, so the whole sedation plan went out the window. No ketamine for Aidan, he was forced to remain kinda-sorta-awake/kinda-sorta-sedated. Horrible. He was awake and screaming (despite the versed) when I left him in the IR room, and awake and screaming when I got him back. I'll go on ahead and assume he screamed the whole time. Thanks for traumatizing him when that's precisely what we were trying to avoid by admitting him, fasting inpatient, and sedating him.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm8swUEvtv_fBOf0CyKGu90lwij23SIGrR4yAUFjJTf6xBKCSEOVEQz5ieRePmAJE3ACZykhVUowTd5FMlaI8YLZgNxfUEudUQfO8jn0-detaIKa6F0sTI_LuvI5Yzthjc9G_aJ66eKoQ/s1600/Jan15-7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm8swUEvtv_fBOf0CyKGu90lwij23SIGrR4yAUFjJTf6xBKCSEOVEQz5ieRePmAJE3ACZykhVUowTd5FMlaI8YLZgNxfUEudUQfO8jn0-detaIKa6F0sTI_LuvI5Yzthjc9G_aJ66eKoQ/s1600/Jan15-7.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before things got crazy up in IR...</td></tr>
</tbody></table>
Anyway, when all was said and done, we were the proud new owners of the AMT G-JET.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRrBvApPuAHstfr5JIIxpkSx-DTDKNZgkfqnUDylm3gW2OLUcToq1SR8kwzCDkGQoM3mth2J8AZaJEKhxhTvmo0DOA8OYBWx9_-eosTpYfUeIONeGdZkPDE__92nLXemLuC4LUmqMJJCc/s1600/Jan15-9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRrBvApPuAHstfr5JIIxpkSx-DTDKNZgkfqnUDylm3gW2OLUcToq1SR8kwzCDkGQoM3mth2J8AZaJEKhxhTvmo0DOA8OYBWx9_-eosTpYfUeIONeGdZkPDE__92nLXemLuC4LUmqMJJCc/s1600/Jan15-9.jpg" height="400" width="300" /></a></div>
<br />
He "woke up" from his "sedation" pretty hard - he screamed at every<b>one</b> and every<b>thing</b> for a few hours before finally passing out. Poor kid.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyshOGefFDFaaJ5OCpKzBZoCGauFKCAIjHfnBD-Y5tEGvAEQ5aUyYXy85cqothKeJNOxdOSX4ycRHg7i_ogL-UPUO0XV6QsltlX8DH9h7sWHNQ9tlf3gF0pzt6OsJdmFfM3Xhzcs9V0ag/s1600/Jan15-10.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyshOGefFDFaaJ5OCpKzBZoCGauFKCAIjHfnBD-Y5tEGvAEQ5aUyYXy85cqothKeJNOxdOSX4ycRHg7i_ogL-UPUO0XV6QsltlX8DH9h7sWHNQ9tlf3gF0pzt6OsJdmFfM3Xhzcs9V0ag/s1600/Jan15-10.jpg" height="400" width="300" /></a></div>
<br />
<br />
Side note - I <b>know</b> they need to put leads on him, but isn't there <b>anything</b> that he's not allergic to? For flip's sake, this poor kid's skin...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG-ZAXzL4ww6KNC5qSWYF108AcDYc2lFWg9yjBwwfEv3IJxfAsXa496omwPm_r_1IUANDBeMctAaLbqlx6caDIOWQdE9By9DBlR770EpEusiv0Rvk-wygpaBGVFnvoeZO9XLD2GMOZ0pM/s1600/Jan15-17.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG-ZAXzL4ww6KNC5qSWYF108AcDYc2lFWg9yjBwwfEv3IJxfAsXa496omwPm_r_1IUANDBeMctAaLbqlx6caDIOWQdE9By9DBlR770EpEusiv0Rvk-wygpaBGVFnvoeZO9XLD2GMOZ0pM/s1600/Jan15-17.jpg" height="320" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBbmId2M0vXBbK2KSD4s9-zqduMvinsmGA7wFKkxVzGjpLtapWH92yxgX0g1JzbKNAppQ6lob5SttpOXiPivSbjjrK2F3lol6cegUV5kBLXw1mB_l5boKsP0jfCW606KUeEOkrxHRyk60/s1600/Jan15-18.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBbmId2M0vXBbK2KSD4s9-zqduMvinsmGA7wFKkxVzGjpLtapWH92yxgX0g1JzbKNAppQ6lob5SttpOXiPivSbjjrK2F3lol6cegUV5kBLXw1mB_l5boKsP0jfCW606KUeEOkrxHRyk60/s1600/Jan15-18.jpg" height="320" width="240" /></a></div>
<br />
<br />
Anyway, we spent the rest of Wednesday ramping up feeds, titrating down IV fluids, and checking blood sugars. The only issue we ran into was a random low blood sugar when the nurse was a few minutes late with his formula refill. Not even joking, we're talking 5 minutes off formula, and he ran low. Poor kid just can't keep his sugars up on his own - which we know, but it's always kind of a crazy thing to see how fast he drops.<br />
<br />
The team in the PACU gave Aidan a "Brave Kid" Cape and he wore it all over CHOP as he explored and recovered. What an amazing, empowering thing - everyone he saw stopped him to gush over how excited they were to meet the bravest kid in the hospital.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9bJLH7816FHMU-prCUp5hd6iO08Kg9t-TisfwpPQtFSc4e8JEBDvNHIdWVTZuS4V-Gw4bhJtwCCcL8fEAOohpNJv05fyiNFSmfqXXbB5TRUtzBH4NrJsp2cgAMg-_pKSMBu4aTYCqqU/s1600/Jan15-12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB9bJLH7816FHMU-prCUp5hd6iO08Kg9t-TisfwpPQtFSc4e8JEBDvNHIdWVTZuS4V-Gw4bhJtwCCcL8fEAOohpNJv05fyiNFSmfqXXbB5TRUtzBH4NrJsp2cgAMg-_pKSMBu4aTYCqqU/s1600/Jan15-12.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-WQowNcqOvRjNb777-tBVSTHsjE6U4_nVq5ILbcDmei4TnQWYPTDQ7_W5lLtTueeuwWv_-OXgiOTwdnH_zgCwTIeDFtoPGbzDC7q_H90LbNFa0K7LgRmQe10148IZBp0svVKzuZ3toeY/s1600/Jan15-13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-WQowNcqOvRjNb777-tBVSTHsjE6U4_nVq5ILbcDmei4TnQWYPTDQ7_W5lLtTueeuwWv_-OXgiOTwdnH_zgCwTIeDFtoPGbzDC7q_H90LbNFa0K7LgRmQe10148IZBp0svVKzuZ3toeY/s1600/Jan15-13.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCUtIqKV6DzKhMQYQmElSTCqrQkLNOJL8akB3IQeI73SpXKHATuyRFhjBCZRdrwbcZPCgkm13d4dbS-HUA4hW8ptAKtoxbaCJcNRYbAt_IhqitKCsK1AH2t1s_eEj3dY8xSlLaMy9ZV0U/s1600/Jan15-14.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCUtIqKV6DzKhMQYQmElSTCqrQkLNOJL8akB3IQeI73SpXKHATuyRFhjBCZRdrwbcZPCgkm13d4dbS-HUA4hW8ptAKtoxbaCJcNRYbAt_IhqitKCsK1AH2t1s_eEj3dY8xSlLaMy9ZV0U/s1600/Jan15-14.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvRGi5dNEetd6_jb9lygMXxhVAezr824B20CbcowTEl4IKJ07FpEomsXXPDfOUMNtEMjR-of8tTGdtnbBpcGbbePSCDc3fVzRlA9amUHaVhX9R9sCF_BuaJTPUzedkatv8-IChPemP5fU/s1600/Jan15-15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvRGi5dNEetd6_jb9lygMXxhVAezr824B20CbcowTEl4IKJ07FpEomsXXPDfOUMNtEMjR-of8tTGdtnbBpcGbbePSCDc3fVzRlA9amUHaVhX9R9sCF_BuaJTPUzedkatv8-IChPemP5fU/s1600/Jan15-15.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAR2UCBaMK5DhdFg2jEbDOkcwV3kHqi_b5D3y3sn3gY-xgAHyX4UdV_HhZ9HDbHTMDcjgpiJHt_G39HV7M534B2bPbqE2G7-EXi6figjI0RZSZvGvu30gcqKeB1RyO3q8RMJ_3gGz2oSU/s1600/Jan15-16.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAR2UCBaMK5DhdFg2jEbDOkcwV3kHqi_b5D3y3sn3gY-xgAHyX4UdV_HhZ9HDbHTMDcjgpiJHt_G39HV7M534B2bPbqE2G7-EXi6figjI0RZSZvGvu30gcqKeB1RyO3q8RMJ_3gGz2oSU/s1600/Jan15-16.jpg" height="400" width="300" /></a></div>
<br />
All in all, it was a good stay, and Aidan actually tolerated his feeds better than ever before. Maybe next time, we'll be home same-day! Which means that this little nugget will get to spend a bit more time in his own big boy bed. Fingers crossed!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhScQ2IqUZorr7miBAXzu-ZSdtXQOqUX2r3rKkhrw37HASUNVF7yNy1ahLxEuXm2shjpXCYjSCsQIdZdaFGLumhAvHfztZJFvzN0xWgQpU0u0ftDZvTqrPqySMbAMfvr3x2tgG6db3hm44/s1600/Jan15-11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhScQ2IqUZorr7miBAXzu-ZSdtXQOqUX2r3rKkhrw37HASUNVF7yNy1ahLxEuXm2shjpXCYjSCsQIdZdaFGLumhAvHfztZJFvzN0xWgQpU0u0ftDZvTqrPqySMbAMfvr3x2tgG6db3hm44/s1600/Jan15-11.jpg" height="400" width="300" /></a></div>
<br />
<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-60437375527942726012014-12-30T13:47:00.001-05:002014-12-30T13:47:27.401-05:00The Flu, and Farewell to 2014<div dir="ltr" style="text-align: left;" trbidi="on">
Two posts in one week? We must be inpatient...<br />
<br />
<div style="text-align: left;">
<i><span style="font-size: large;">The Great Influenza of 2014</span></i></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
You know, I'd just been saying to Tom that it was going to be so nice to have one nice healthy Christmas for Aidan. So, truly, I asked for this.</div>
<br />
<div style="text-align: left;">
It started on Saturday (12/21). He was fine all day - he played all morning, went to Occupational Therapy and was actually fairly cooperative, went for a haircut and <i>walked</i> around the mall <i>on his own feet</i>, and then we all went grocery shopping. Long, productive day. So when he seemed a bit extra tired and cranky, we weren't too concerned - no nap will do that to a guy! Things went downhill fast after bedtime - his breathing was fast and shallow, and although he was keeping his sats up around 95ish, his heart rate was high and he had a low-grade fever. Something was brewing. Every 20 minutes, he'd wake up and cry, needing to be held and comforted back to sleep. He complained that his tummy hurt and started gagging and retching - sure he was going to throw up (we know that he really can't, but when he's nauseous, he's <i>so sure</i> that he will). </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
By morning, he was clearly sick. Slumped halfheartedly in his beanbag chair, refusing to walk because "my feet hurt for walking, so carry me mommy!", feverish, lethargic, and still retching. </div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ-OKUA_42rJM-2Kg8t3nDenLh73IpBSexRhZhSlVBGDE6XPN-uFqO78AV7o41bNe0D5U7P13AFZ639d2PnazVPaJ52DPOVzBeNotjXbxH9Kq2mc2v3T1fLxCsTZohJ7U8-9CbbB7zp_E/s1600/1+beanbag.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ-OKUA_42rJM-2Kg8t3nDenLh73IpBSexRhZhSlVBGDE6XPN-uFqO78AV7o41bNe0D5U7P13AFZ639d2PnazVPaJ52DPOVzBeNotjXbxH9Kq2mc2v3T1fLxCsTZohJ7U8-9CbbB7zp_E/s1600/1+beanbag.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I busied myself around the house, finishing up dishes and laundry and other things that needed to be done to get the house in order, while playing the "hospital or not?" game in my head. I called Urgent Care to ask if they could do a rapid flu test - they couldn't, but advised what I already knew. Half an hour later, we were en route to CHOP.</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtoY-NupKkIV25kKx_skReqmwHD5mzAW_4ayW9UP4hdHOVYAf-crHz-t0C2iTesFT8r8d6iSpEItJlvF97_oALaw9XvzjlILodOZ2m0R6lvNJV2D56IyGTuMVjbVGliEiU9tOmFS5sTL0/s1600/2+car.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtoY-NupKkIV25kKx_skReqmwHD5mzAW_4ayW9UP4hdHOVYAf-crHz-t0C2iTesFT8r8d6iSpEItJlvF97_oALaw9XvzjlILodOZ2m0R6lvNJV2D56IyGTuMVjbVGliEiU9tOmFS5sTL0/s1600/2+car.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
The ER was a madhouse - clearly, everyone ELSE in the world was ALSO sick on Christmas week, so we waited about an hour to be seen. Aidan spent that time practicing his "If I look really sick, and super sad, will it get me more presents for Christmas?" look. It isn't <i>not</i> working...</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1d0HJsE30NHdoFqToDqZ9sQd4h3HTWkjoFVPAiOPR-nUVB4ln86K4FUWIQl1J3bfbxQ01MqrviRLfTUb19GnDNoqFqx1Am3SSfyeO0X7B05mM0qQZki8zpJliSDGdOEB5LfCqdKGgtE/s1600/3+ER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ1d0HJsE30NHdoFqToDqZ9sQd4h3HTWkjoFVPAiOPR-nUVB4ln86K4FUWIQl1J3bfbxQ01MqrviRLfTUb19GnDNoqFqx1Am3SSfyeO0X7B05mM0qQZki8zpJliSDGdOEB5LfCqdKGgtE/s1600/3+ER.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieYm4_H9DCDd-UpXcV5hNI5BKqULi3qitlsQ8v63sLrOWVOsSHxq-f3w4bkviQhHDFqVSPE-RXoohsSjc0szXFLG9yllWCkCNcfPdaLbOeOWDojxYTBMJJt1oOcKPzlYMLZzgJYw1GwqI/s1600/4+ER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieYm4_H9DCDd-UpXcV5hNI5BKqULi3qitlsQ8v63sLrOWVOsSHxq-f3w4bkviQhHDFqVSPE-RXoohsSjc0szXFLG9yllWCkCNcfPdaLbOeOWDojxYTBMJJt1oOcKPzlYMLZzgJYw1GwqI/s1600/4+ER.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Once we got a room - and a pretty SWEET room too actually (it had an en suite bathroom!), we settled in for <b>nine hours of who even knows what</b>. They did some bloodwork, suctioned him for flu/RSV testing, placed an IV (the usual drama ensued), and gave fluids and sugars.</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ7-TiMxVSPLq2pDWYd-sIeVJs3smywjpimZrahn9gl1Vut_k5hYtc4osa2oQKOKli33RtnJ244R533nD08hiHJtkM-wBWpOyKJ3bUVY2DZ-YpDKiKsqpo4HOSsDTexUFutmP0qMJe474/s1600/6+IV.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ7-TiMxVSPLq2pDWYd-sIeVJs3smywjpimZrahn9gl1Vut_k5hYtc4osa2oQKOKli33RtnJ244R533nD08hiHJtkM-wBWpOyKJ3bUVY2DZ-YpDKiKsqpo4HOSsDTexUFutmP0qMJe474/s1600/6+IV.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOpgSaB9wna_fw86BS8MH863ugvDyAswRLEujz1ongjNwIzVzcYjUUX1FPVbfVQ-CCET0iHAfqNZahK3zFnnynRTBvzdHtRYp-01SXEyoWOichFI49rhMyBSyRNzV5SRogqHOeGvfRBxk/s1600/7+Sad.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOpgSaB9wna_fw86BS8MH863ugvDyAswRLEujz1ongjNwIzVzcYjUUX1FPVbfVQ-CCET0iHAfqNZahK3zFnnynRTBvzdHtRYp-01SXEyoWOichFI49rhMyBSyRNzV5SRogqHOeGvfRBxk/s1600/7+Sad.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7pmd4Bv3h0A0RC80Bg5qv9V3FKhDgp_wLqMEictcLe2R2rnvAMYnZ02tf2Kr3H_wzaw6h6fXAeJRJJgXewqI8Dvf6yo4-i9X5Yq__hze5Sr0I6nJd3PaqrqJ9EPACByLgj_We9MfAeCA/s1600/8+Tired.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7pmd4Bv3h0A0RC80Bg5qv9V3FKhDgp_wLqMEictcLe2R2rnvAMYnZ02tf2Kr3H_wzaw6h6fXAeJRJJgXewqI8Dvf6yo4-i9X5Yq__hze5Sr0I6nJd3PaqrqJ9EPACByLgj_We9MfAeCA/s1600/8+Tired.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4pOSE1VyEQdEEFy2YF5sgry2BHG1KZ_XhJUaP3ZeNgQju5dycILI47gBjcsDxJbpH7WbJwIgTKcwp1s8c2ic4i8fxp1byYnhOxXv8j9NbTceoAi90WY3E7Ybd0v-ii5BVpxYbloUP7lc/s1600/5+ER.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4pOSE1VyEQdEEFy2YF5sgry2BHG1KZ_XhJUaP3ZeNgQju5dycILI47gBjcsDxJbpH7WbJwIgTKcwp1s8c2ic4i8fxp1byYnhOxXv8j9NbTceoAi90WY3E7Ybd0v-ii5BVpxYbloUP7lc/s1600/5+ER.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Aidan looked suitably sad the whole time. Eventually, he was admitted upstairs for IV fluids and sugars while he got through whatever virus was taking him down. We'd later find out that they sent Aidan's flu swab on the slow boat to China because they didn't think flu was likely, but oh guess what, he tested positive for flu.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Anyway, once we got upstairs, (new room! 5S4) Aidan and Daddy hung out for a bit while I went down to the car to get my overnight bag, where I discovered <b>much to my extreme dismay</b> that I forgot a vital piece of work equipment, and I had to drive all the way home for it. An hour each way. At midnight. Kill me now. So yeah, I did that, and came back with some awesome Sofia the First action figures for Aidan from Santa. </div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilnoZovLcfR67ibbXaK1qxLoDRkQiMhQmazsqWB7dWR9Wh-MEcSKriSaQAoCOpHRCf-CEbj4gh3rE5lcXfEeekZMzGPN7i5tO2xEdeqMrLL6x9o6xFAAQW_D-NQF3S6f2TlnK_rz9e4x8/s1600/9+Sofia.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilnoZovLcfR67ibbXaK1qxLoDRkQiMhQmazsqWB7dWR9Wh-MEcSKriSaQAoCOpHRCf-CEbj4gh3rE5lcXfEeekZMzGPN7i5tO2xEdeqMrLL6x9o6xFAAQW_D-NQF3S6f2TlnK_rz9e4x8/s1600/9+Sofia.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
You might be thinking they look just like your daughter's dolls. So close. But not quite, because they're obviously action figures.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Anyway, uneventful night, except for all of the blood sugar testing and such, and we got the flu Dx and first dose of Tamiflu in the morning. It must have made him pretty drowsy, because the poor kiddo was out like a light for most of the next afternoon (Monday, 12/22).</div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRB1PGTdQr3xDChwYfPwnGwCcHFczpPv1N9XB_tUGpikRQ0wbfxMsdAqPPOjf6JNbY1rkBwRVTLKHdcX9sAJ7U5GmVqWLxUKhp7AALKYSRfJa57LzOxrMRnr0O8p5RyClWCg7h1wW19M4/s1600/10+Tired.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRB1PGTdQr3xDChwYfPwnGwCcHFczpPv1N9XB_tUGpikRQ0wbfxMsdAqPPOjf6JNbY1rkBwRVTLKHdcX9sAJ7U5GmVqWLxUKhp7AALKYSRfJa57LzOxrMRnr0O8p5RyClWCg7h1wW19M4/s1600/10+Tired.jpg" height="400" width="300" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
We were able to get him back up to full feed rate and no IV, despite some icky GI side effects, so this flustravaganza was only a 1.5 day affair, which might actually be an all-time record low (way to go, Aidan!). Very happy to bring him home and spend Christmas <b>at home</b> and (relatively) on the mend.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
So long, CHOP! See you in 2015!</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-28884648408796386092014-12-22T08:00:00.000-05:002014-12-22T08:00:02.273-05:00Aidan… With Eos does Halloween<div dir="ltr" style="text-align: left;" trbidi="on">
<!--[if !mso]>
<style>
v\:* {behavior:url(#default#VML);}
o\:* {behavior:url(#default#VML);}
w\:* {behavior:url(#default#VML);}
.shape {behavior:url(#default#VML);}
</style>
<![endif]--><br />
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves>false</w:TrackMoves>
<w:TrackFormatting/>
<w:DoNotShowPropertyChanges/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
</w:Compatibility>
<w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]--><!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="79" Name="header"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:11.0pt;
mso-para-margin-right:0in;
mso-para-margin-bottom:0in;
mso-para-margin-left:0in;
mso-para-margin-bottom:.0001pt;
line-height:13.0pt;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Arial","sans-serif";
mso-ascii-font-family:Arial;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:"Times New Roman";
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Arial;
mso-hansi-theme-font:minor-latin;
mso-bidi-font-family:"Times New Roman";
mso-bidi-theme-font:minor-bidi;}
</style>
<![endif]-->
<br />
<div class="MsoNormal">
As December draws to a close, I realize that I haven’t
really had a chance to reflect on Halloween.<span style="mso-spacerun: yes;">
</span>So, how does a food-free, pumpkin-allergic boy with high anxiety and a
hatred of costumes do Halloween?<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">Very Carefully.</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It takes some planning, to be sure.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hurdle #1 – The costume.<span style="mso-spacerun: yes;">
</span>The boy hates things that touch his head, face, or neck.<span style="mso-spacerun: yes;"> </span>Also, he’s not thrilled with pants that don’t
look like his regular everyday pants, shirts that do and/or don’t have sleeves,
jackets, hats, or nudity.<span style="mso-spacerun: yes;"> </span>He hates shoes
that look different than his normal shoes, boots, sandals, socks with “things”
in them, and being barefoot.<span style="mso-spacerun: yes;"> </span>So I can
tell you quite honestly that if getting dressed every day is a war, then a
Halloween Costume is a Nuclear Bomb.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
By this age (almost four), most kids have some idea of what
they’d like to be.<span style="mso-spacerun: yes;"> </span>The idea might change
daily (hourly?), but there are ideas out there.<span style="mso-spacerun: yes;">
</span><i style="mso-bidi-font-style: normal;">Ninja Turtle.<span style="mso-spacerun: yes;"> </span>Queen Elsa.<span style="mso-spacerun: yes;">
</span>Spider Man.<span style="mso-spacerun: yes;"> </span>Sharknado.</i><span style="mso-spacerun: yes;"> </span>We don’t really have that here.<span style="mso-spacerun: yes;"> </span>Though I don’t know what <i style="mso-bidi-font-style: normal;">every</i> child with Autism is like, <b style="mso-bidi-font-weight: normal;">my</b> child with Autism is too literal to really “get it” – he knows
that he <i style="mso-bidi-font-style: normal;">isn’t</i> a Ninja Turtle, so how
absurd to dress up like one.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once we get through that, with assurances upon assurances
that we’re <i style="mso-bidi-font-style: normal;">just pretending, isn’t that
silly!?</i>, we still need to figure out who/what we’re pretending to be.<span style="mso-spacerun: yes;"> </span>This year, it really just fell into our
laps.<span style="mso-spacerun: yes;"> </span>After a particularly positive
visit with his GI, Aidan looked at me and said “<i style="mso-bidi-font-style: normal;">Do you think I’m Doctor Liacouras?”</i><span style="mso-spacerun: yes;">
</span><b style="mso-bidi-font-weight: normal;">I can make that happen, kid!</b><span style="mso-spacerun: yes;"> </span>Traditional white lab coat with a stethoscope
wouldn’t really do – Dr. L is a <i style="mso-bidi-font-style: normal;">Surgeon</i>
and Surgeons wear Scrubs – a quick query to my 200 closest friends got us a
couple of pairs of embroidered scrubs, ready for Halloween happiness.<span style="mso-spacerun: yes;"> </span>Since our little doctor-to-be has no fewer
than <b style="mso-bidi-font-weight: normal;">five</b> doctor kits of his own,
accessories were already covered.<span style="mso-spacerun: yes;"> </span>We
lucked out here – scrubs are as close as humanly possible to pajamas, and it
only took Aidan a couple of trial runs to get used to wearing them.<span style="mso-spacerun: yes;"> </span>By Halloween, putting them on was a <b style="mso-bidi-font-weight: normal;">privilege</b>!<span style="mso-spacerun: yes;"> He now has scrub options, and can give you a scrub fashion show.</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsojEWjY9y2VpK595dJzaiYOqDb77BS12p7z3xMJuG7WQ-ZqfbVbKl5Zsb9cKllq2nodgpq21ZXx-BwQG5E6bgvR27-T2ggRNC9fOvr63JXamqK5xftQy0hD94fNhSl3fl2t6crCt3hTY/s1600/scrub1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjspeX8T4KV2B4yvivdEXhAyBto52S_ya7ZNCOvS4eyTYiJuLi3vLVag32O15dqqRw3EOhCnwCPoCZSt1xRrepmWutZ2VE4bd7r8H6gAsc1IarOyCxoWnPjo6gk-y8WTqUXCccPtQJ2hg8/s1600/scrub2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjspeX8T4KV2B4yvivdEXhAyBto52S_ya7ZNCOvS4eyTYiJuLi3vLVag32O15dqqRw3EOhCnwCPoCZSt1xRrepmWutZ2VE4bd7r8H6gAsc1IarOyCxoWnPjo6gk-y8WTqUXCccPtQJ2hg8/s1600/scrub2.jpg" height="400" width="300" /></a><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsojEWjY9y2VpK595dJzaiYOqDb77BS12p7z3xMJuG7WQ-ZqfbVbKl5Zsb9cKllq2nodgpq21ZXx-BwQG5E6bgvR27-T2ggRNC9fOvr63JXamqK5xftQy0hD94fNhSl3fl2t6crCt3hTY/s1600/scrub1.jpg" height="400" width="300" /></div>
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFrXrHAdTJP7pTrTLkZNCf20t_Gzpg6p8-6VAcPhPlAC5sCgrMSzJ0dcJmNK00uYjEsY8HBRqrOjKEyCglPjhhUkGu6-WrIlnho2TAyry3bT7R_t9T8FvVQKocJVExD4J0KvOy-4vej4Y/s1600/scrub5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFrXrHAdTJP7pTrTLkZNCf20t_Gzpg6p8-6VAcPhPlAC5sCgrMSzJ0dcJmNK00uYjEsY8HBRqrOjKEyCglPjhhUkGu6-WrIlnho2TAyry3bT7R_t9T8FvVQKocJVExD4J0KvOy-4vej4Y/s1600/scrub5.jpg" height="400" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT4Z0v31TZKR42qmES86aEwAhgxpsHoBM7c_TWZSed2r4CURQvZoe63asL99T5ldMifv_0TLj8rcH_Rf_8B3xai_u4-9PZnf12UV5jrSaGDSf0ZsrN8xAP9joParWlVSJ8tP6h9p0tFzw/s1600/scrub3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT4Z0v31TZKR42qmES86aEwAhgxpsHoBM7c_TWZSed2r4CURQvZoe63asL99T5ldMifv_0TLj8rcH_Rf_8B3xai_u4-9PZnf12UV5jrSaGDSf0ZsrN8xAP9joParWlVSJ8tP6h9p0tFzw/s1600/scrub3.jpg" height="400" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitLOE0JtDwZtaWdvbzDkghKNLJW-QSIjNEYigUjKTqctVsYfdy3d1aWp6Ti46NoWRcxBMvoGBWKGh4OfSstxsTK-tVnEchc8siREbwQmzpBEaAAuCqUSu7FscWdgD9ljp-mGbmgSu1QL0/s1600/scrub4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitLOE0JtDwZtaWdvbzDkghKNLJW-QSIjNEYigUjKTqctVsYfdy3d1aWp6Ti46NoWRcxBMvoGBWKGh4OfSstxsTK-tVnEchc8siREbwQmzpBEaAAuCqUSu7FscWdgD9ljp-mGbmgSu1QL0/s1600/scrub4.jpg" height="400" width="300" /></a></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hurdle #2 – The décor.<span style="mso-spacerun: yes;">
</span>Okay, so pumpkins.<span style="mso-spacerun: yes;"> </span>We don’t do
pumpkins.<span style="mso-spacerun: yes;"> </span>The boy is severely allergic,
think anaphylaxis.<span style="mso-spacerun: yes;"> </span>Since I take death
pretty seriously, we don’t play around, and there were no pumpkins to be found
in our household.<span style="mso-spacerun: yes;"> </span>No worries though – we
had <b style="mso-bidi-font-weight: normal;">plenty</b> of faux pumpkin love,
tubie-style.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNg-YIhXs697hi6QWcHzYt1Uj5o32JHQWryUhCr61pm36wHcr-so_6CTujAAxF2iJ2LPRna7fwCfHGUa_B4JzSxY3BrRR3Dju44cd3q3kBMH39bJLqzDio7tckgGezzXX3dyzrNS-bVv0/s1600/pumpkin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNg-YIhXs697hi6QWcHzYt1Uj5o32JHQWryUhCr61pm36wHcr-so_6CTujAAxF2iJ2LPRna7fwCfHGUa_B4JzSxY3BrRR3Dju44cd3q3kBMH39bJLqzDio7tckgGezzXX3dyzrNS-bVv0/s1600/pumpkin.jpg" height="400" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hurdle #3 – The treats.<span style="mso-spacerun: yes;">
</span>This is the big bad.<span style="mso-spacerun: yes;"> </span>And the
problem is two-fold – both at school and out in the community.<span style="mso-spacerun: yes;"> </span>I’ll tackle school first.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As Halloween approached, we got a note home from school
inviting us to come visit for Aidan’s Halloween parade, and then stay to help
celebrate by decorating cookies.<span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Really?<span style="mso-spacerun: yes;"> </span></i></b>I had to say something – honestly,
WHY do three-year-olds need cookies on Halloween?<span style="mso-spacerun: yes;"> </span>Is a Halloween Craft really just too
disappointing?<span style="mso-spacerun: yes;"> </span>I responded with an
email:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #cc0000;">I got the note about next week's Halloween Parade and cookie
decorating activity.<span style="mso-spacerun: yes;"> </span>Obviously, Aidan
can't participate in cookie decorating, but I would like to help find an
alternative activity that he can do so that he won't feel excluded.<span style="mso-spacerun: yes;"> </span>It's very important to us that Aidan be able
to participate in these activities with his peers as often as possible. </span></div>
<span style="color: #cc0000;">
</span><div class="MsoNormal">
<br /></div>
<span style="color: #cc0000;">
</span><div class="MsoNormal">
<span style="color: #cc0000;">In the future, please let me know if there's anything I can
do to help make celebrations more inclusive by taking the focus away from
food.<span style="mso-spacerun: yes;"> </span>I would be happy to help provide
crafts or activities for his classmates that would allow everyone to safely
enjoy the celebration together.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know what I’d hoped to accomplish – I just needed
them to know that whether they knew it or not, they <b style="mso-bidi-font-weight: normal;">were</b> excluding Aidan by choosing something that literally every
child but him could do, and it’s <b style="mso-bidi-font-weight: normal;">not </b>the
only way to celebrate.<span style="mso-spacerun: yes;"> </span>To call their
response disappointing is an understatement.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #cc0000;">Thank you for your email. We do have crafts for the children
as well. Please understand that when planning Halloween we tend to keep
activities very simple as very few families choose to stay after the
parade.<span style="mso-spacerun: yes;"> </span>I do however understand your
concern and would never exclude Aidan from the class.</span></div>
<span style="color: #cc0000;">
</span><div class="MsoNormal">
<span style="color: #cc0000;">Have a nice weekend.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It’s hurtful, I think, because I’ve told them that they’re
excluding him and their only response is a halfhearted “Oh we would never…”<span style="mso-spacerun: yes;"> </span>I did the best I could, because that the end
of the day, we are his parents and it's our job to fight these battles.<span style="mso-spacerun: yes;"> </span>I sent
him foam shapes that might look like “cookies” along with glitter glue “frosting”
and foam sticker “sprinkles.”<span style="mso-spacerun: yes;"> </span>I wasn’t
at the party, but my husband tells me that he had a good time.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-8VQhXOqHl8mQCb0sujv8Jvl6qAw3O08UiNd-ToBOd05LNJzZc6hRTYu3u0v4FD4ojsxXq1nD_Wp4Zz3h9fisUcYShp7UjT761DPIj4Bf_9208NRGeoUVBVmsIoxiyUySsx0bpq4ou4E/s1600/cookies.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-8VQhXOqHl8mQCb0sujv8Jvl6qAw3O08UiNd-ToBOd05LNJzZc6hRTYu3u0v4FD4ojsxXq1nD_Wp4Zz3h9fisUcYShp7UjT761DPIj4Bf_9208NRGeoUVBVmsIoxiyUySsx0bpq4ou4E/s1600/cookies.jpg" height="320" width="240" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I also sent in non-food treats for all of his peers, because
that’s how we roll.<span style="mso-spacerun: yes;"> </span>His classmates’
parents either know he has severe allergies, or think we’re really pointlessly
passionate about not eating ever.<span style="mso-spacerun: yes;"> </span>Either
way, I think they went over well.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC7cf7kN_pj59kluc0XAw854EkxQIx4ce4yC1q9W9bQNDwsrVNgs80hEFHGgahxLVSt8rXS0P4Yt0yK_8586hReKaiMQbfaKZJ-8bjSO8uM0mAfUT0J6ES4SV4lm_CFrAjgVo1p3Zu9Wg/s1600/treat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC7cf7kN_pj59kluc0XAw854EkxQIx4ce4yC1q9W9bQNDwsrVNgs80hEFHGgahxLVSt8rXS0P4Yt0yK_8586hReKaiMQbfaKZJ-8bjSO8uM0mAfUT0J6ES4SV4lm_CFrAjgVo1p3Zu9Wg/s1600/treat.jpg" height="400" width="300" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKI27BMCLXTmuJ-gfbkFsbII1qzagoDpF-Iga98EpCcTscxpH7QruPaBMzHP6MRR1BiZ6cOW-w-UBYb4YZ6FpdHnAYxuCqs9O6CPen_Ik5vmyQiot9Lp3SqKtplDm6uyiuZYDN59GPxHg/s1600/treats.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKI27BMCLXTmuJ-gfbkFsbII1qzagoDpF-Iga98EpCcTscxpH7QruPaBMzHP6MRR1BiZ6cOW-w-UBYb4YZ6FpdHnAYxuCqs9O6CPen_Ik5vmyQiot9Lp3SqKtplDm6uyiuZYDN59GPxHg/s1600/treats.jpg" height="298" width="400" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m sure this is just the first of many run-ins (Actually, not
the first, just the most recent.) with school over inclusion.<span style="mso-spacerun: yes;"> </span>It just breaks my heart to know that they don’t
care.<span style="mso-spacerun: yes;"> </span>“Easy” won out over “Right”, and
there’s been a noticeable difference in the way his school has treated us since
this email exchange.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But back to the positive stuff – Treats Out and About.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Our Halloween tradition is to Trick or Treat with Aidan’s
best friend, Teddy.<span style="mso-spacerun: yes;"> </span>This year was no
exception, so Dr. Aidan and Engineer Teddy went out on the town and collected
truly insane amounts of candy from every “Halloween House” in Teddy’s
neighborhood.<span style="mso-spacerun: yes;"> </span>Having prepared
extensively (thank you, social stories, TV shows, and visual schedules!), Aidan
was SUPER successful this year, and even said “Trick or Treat” at almost every
house!<span style="mso-spacerun: yes;"> </span>Well, halfway through, he forgot
the phrase “Trick or Treat” and subbed in “Halloween!” – But, you know,
samesies!<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebAQMXs41NewX4bUc2jpotiYAOjLLKGpW3ehyaHmNq_JByrtiredWOJBD6FkzjuLtZJDgxAHAM0gSmiFY1NDx-g53hwjyq4zNXnrGSJ7sTiQ5NomCDzy_QCyjXMehyrjC9ckoUqWCt3c/s1600/boys.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjebAQMXs41NewX4bUc2jpotiYAOjLLKGpW3ehyaHmNq_JByrtiredWOJBD6FkzjuLtZJDgxAHAM0gSmiFY1NDx-g53hwjyq4zNXnrGSJ7sTiQ5NomCDzy_QCyjXMehyrjC9ckoUqWCt3c/s1600/boys.jpg" height="298" width="400" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I prepared ahead by making Aidan-safe just-sugar lollipops
(<a href="http://aidanwitheos.blogspot.com/2014/06/just-sugar-lollipops.html">Recipe here</a>), and snuck one in his bag of loot.<span style="mso-spacerun: yes;"> </span>At the end of the night, he enjoyed a
lollipop while I went through his stash and picked out what he could keep.<span style="mso-spacerun: yes;"> </span>We actually saw a few Teal Pumpkin houses,
where non-food treats were given out – how awesome!<span style="mso-spacerun: yes;"> </span>Aidan wound up with quite a few things
between his school friends and Teal Pumpkin houses, and of course, Teddy’s
wonderful Nana.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOvfV5zwjxXXpqikhLC9-eJcXZA7nD_pIu31Nl6grT3W0JgxvXUgwif_FxAHKFZmFyxQrgjaIzmwCEbJ1Dc-wPQB130Lga1KD3LRKmjzHxp3Koum78CP7dSXhD2MU_g5iKWaIa7wjYTSQ/s1600/toys.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOvfV5zwjxXXpqikhLC9-eJcXZA7nD_pIu31Nl6grT3W0JgxvXUgwif_FxAHKFZmFyxQrgjaIzmwCEbJ1Dc-wPQB130Lga1KD3LRKmjzHxp3Koum78CP7dSXhD2MU_g5iKWaIa7wjYTSQ/s1600/toys.jpg" height="298" width="400" /></a></div>
<br /><div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The next day, we took Aidan’s candy bucket to the toy store,
where I set us all up for success by placing <b style="mso-bidi-font-weight: normal;">one</b> toy that I knew he’d love in eyesight, and offered him the
opportunity to buy it with his candy bucket.<span style="mso-spacerun: yes;">
</span>He was <b style="mso-bidi-font-weight: normal;">so happy</b> and very
proudly handed that candy over.<span style="mso-spacerun: yes;"> </span>He never
once asked for the candy again.<span style="mso-spacerun: yes;"> </span>Spur of
the moment decision, but I think it will be a new tradition, because it went
over really well!</div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqSfFLgelXktSALJdE9wiOP7HjidqxK02svZJiDhMZ2kMY8YOrRDl7z_sEcuzyRChz2CKg1lSWLGl1Ik5lQabUwOxFOGiRX4b1OonzRo9gPts2pCUxIFAccsy_yV_DRGvSKQGX5LrK62k/s1600/chugger.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqSfFLgelXktSALJdE9wiOP7HjidqxK02svZJiDhMZ2kMY8YOrRDl7z_sEcuzyRChz2CKg1lSWLGl1Ik5lQabUwOxFOGiRX4b1OonzRo9gPts2pCUxIFAccsy_yV_DRGvSKQGX5LrK62k/s1600/chugger.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Z21pO02Z_cM6_6DmShmxuvHeegb4vIZOkNJLpVvDH_gVlISrwk_AHwzD4ctQ4PBLncfgZ4b48n2yymkc-z92QsrBiQjaukMkXjwf8gJmECEmkmyUxfMODohMhcyOWjGv6kejmVGs9Ek/s1600/action+chugger.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-Z21pO02Z_cM6_6DmShmxuvHeegb4vIZOkNJLpVvDH_gVlISrwk_AHwzD4ctQ4PBLncfgZ4b48n2yymkc-z92QsrBiQjaukMkXjwf8gJmECEmkmyUxfMODohMhcyOWjGv6kejmVGs9Ek/s1600/action+chugger.jpg" height="400" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So that was our Halloween in a nutshell.<span style="mso-spacerun: yes;"> </span>So much success.<span style="mso-spacerun: yes;"> </span>I hope to be able to work more closely with
his school in the future to make their celebrations less exclusionary, at
Halloween and all year long.</div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIoNYtA98LUTKHrb9OtnDj_vGayJdM1at8zY7I18MxhjhWgqpwKAzbLEYvOThKw87wy2rqFpcOXx5lIlb8MP5m-ed7J8twLIPxMUULDPcyoHvmEucaed6ToWP8mWm-Y1x5h-IF4U29neA/s1600/happy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIoNYtA98LUTKHrb9OtnDj_vGayJdM1at8zY7I18MxhjhWgqpwKAzbLEYvOThKw87wy2rqFpcOXx5lIlb8MP5m-ed7J8twLIPxMUULDPcyoHvmEucaed6ToWP8mWm-Y1x5h-IF4U29neA/s1600/happy.jpg" height="400" width="300" /></a></div>
<div class="MsoNormal">
<br /></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com1tag:blogger.com,1999:blog-4289467626085219850.post-90092712855459133142014-09-29T08:00:00.000-04:002014-09-29T08:00:06.433-04:00Tubie Whoobies!<div dir="ltr" style="text-align: left;" trbidi="on">
Recently, we found out that a popular tube pad store, <a href="http://tubiewhoobies.com/">Tubie Whoobies</a>, decided to start giving out a free sample pad so that new customers could try the product out. I figured we had nothing to lose - I've always wanted to try them, but they're quite a bit more expensive than the pads I've been buying Aidan, so I just couldn't justify it. How much better could they really be right?<br />
<br />
My sample showed up pretty quickly, and Aidan was <b>overjoyed</b> to find out that it was a heart! That's the first big selling point - they're actually shaped - not just round and themed based on the fabric.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWvNi251LsmKZ6zrucakqA6X_je3McpP7OhGo0PN9WI69ZJv9_HFkl2hpGEvedbRCQI7XaduWlAmKodg5aW3EtFn6y78iWzfUIYVubc2AJpdccH6Tysv3TPRmai6WME012glp-yiCSxNw/s1600/whoobie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWvNi251LsmKZ6zrucakqA6X_je3McpP7OhGo0PN9WI69ZJv9_HFkl2hpGEvedbRCQI7XaduWlAmKodg5aW3EtFn6y78iWzfUIYVubc2AJpdccH6Tysv3TPRmai6WME012glp-yiCSxNw/s1600/whoobie.jpg" height="320" width="239" /></a></div>
<br />
He begged to wear it RIGHTNOWPLEASEMOMMY!?!?!? Sure thing, sweet pea!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpVshcRgVtdPNlxDBtN4TCxNqZ8f0Uq_aGG6FxtTGTrJCqn1DgRT-kHPen7dmP4NdHZBBvd0xxRcvtp6cyEOf718ejg2cCT4vPRvYdkMO-jvwjCspp3Snc6cCi0nso4I82lD6zwx84AQY/s1600/whoobie3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpVshcRgVtdPNlxDBtN4TCxNqZ8f0Uq_aGG6FxtTGTrJCqn1DgRT-kHPen7dmP4NdHZBBvd0xxRcvtp6cyEOf718ejg2cCT4vPRvYdkMO-jvwjCspp3Snc6cCi0nso4I82lD6zwx84AQY/s1600/whoobie3.jpg" height="400" width="298" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5qaUpqVmQGdOCh-HtWj9noGEcA1CNK8WqYz0U2o4BhMs06_DNGhD5sKcGgA0zp_XmJN0N9sNym5t6CGI8RtbpbLGvVsGh3pu8wjXMgINEH9c9BlJUiu-_JOx6Fe7Rw1KW5Kgm074cA2c/s1600/whoobie4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5qaUpqVmQGdOCh-HtWj9noGEcA1CNK8WqYz0U2o4BhMs06_DNGhD5sKcGgA0zp_XmJN0N9sNym5t6CGI8RtbpbLGvVsGh3pu8wjXMgINEH9c9BlJUiu-_JOx6Fe7Rw1KW5Kgm074cA2c/s1600/whoobie4.jpg" height="400" width="298" /></a></div>
<br />
He loves it! He showed everyone at school the next day, and despite some initial confusion regarding the location of "MY HEART!!!", I think it was a hit.<br />
<br />
For my part, I'm happy too :) It's been washed a couple of times now and still looks good. No irritation or allergic reaction on his skin or around his stoma. And the snaps seem to be good quality - not always the case with some of the more inexpensive tube pads. I can tell that quite a bit of work goes into these. They're really well-finished and I think they'll hold up nicely as we wash and wear them to death over the next few years.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP_jxcYBU1kgU8FKOp76D5hjZhH323J63iVVUqn-fFzd_5FjMUJi4kFRBypgK6iXvRBLjww8UoKmENchCnwiuLW23ytC9buPOEHMguSpvTIlJZT2rf7liQZny3W0DIfKAxsMM0C_x0WHY/s1600/whoobie2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP_jxcYBU1kgU8FKOp76D5hjZhH323J63iVVUqn-fFzd_5FjMUJi4kFRBypgK6iXvRBLjww8UoKmENchCnwiuLW23ytC9buPOEHMguSpvTIlJZT2rf7liQZny3W0DIfKAxsMM0C_x0WHY/s1600/whoobie2.jpg" height="320" width="239" /></a></div>
<br />
<br />
I do still like having some of the other tube pads in our stash, because I like having velcro closure on the days that my osteoarthritis is flaring up (Tubie Whoobies only come in snap) - but Tubie Whoobies is the only company I've found that offers these shaped pads - and there are great options for older kids too. A lot of the round pads look so babyish. Tubie Whoobies has a lot of sports and truck option for older boys, and princesses for the girls. (There are actually <i>hundreds</i> of options on their page, including sets that offer cost savings over buying the pads individually. As for how many you need - it probably varies by person and how often you like to do laundry. We go through one pad every day, but we know people who need to change them more often due to more drainage from the stoma.) We just placed our order and chose these awesome "big boy" tube pads:<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKonljPWvFu6dOjCfdTsywctnB3e3HIzbebaapmRHbYVJLfMXKyVxIT4dstSce5lH-K6JNfheXajlEKzyrFbtZ2ufjojnnFKbmKbdwfo1nEQQ_GCOI0Mcr8NdBrDHSn_RHJ_VxnnP91sk/s1600/autism.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKonljPWvFu6dOjCfdTsywctnB3e3HIzbebaapmRHbYVJLfMXKyVxIT4dstSce5lH-K6JNfheXajlEKzyrFbtZ2ufjojnnFKbmKbdwfo1nEQQ_GCOI0Mcr8NdBrDHSn_RHJ_VxnnP91sk/s1600/autism.jpg" /><br />
</a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YpvwUmwruSxPlDfigOqQdx2GMDgJsbIKjgSMNFqQtM6oC_s661o997bLoBJQ-mUGPYktleSpv71x9VaMqd3C0C6CZpw2ZmXudkbfEptlyYJYkWofptNx0xVb_uEzIkkA_w1y6eGzePE/s1600/car.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPYmbGVXv_RxcLcpSxMQufxvDol9PN4vP-ZqxEZro_o2byK9HZARaDPC-Wazob_z5GH4HRqHUxHE-dumjHvQ1IBqDymzf1p74IpDXbXI7-iemSdtk0VPhcpcOAaF2a09lH1eclktZFNUs/s1600/superboy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPYmbGVXv_RxcLcpSxMQufxvDol9PN4vP-ZqxEZro_o2byK9HZARaDPC-Wazob_z5GH4HRqHUxHE-dumjHvQ1IBqDymzf1p74IpDXbXI7-iemSdtk0VPhcpcOAaF2a09lH1eclktZFNUs/s1600/superboy.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGiKDMTfN9KtPRUlSJWqce0xpm9nuPUUkiM2c1SdcxyHIdK9jPljuuMYCJDPXEM_HRjhyW0qA9WMQwakwTNxhwE8pOrJ3tdm-A1bLiwKxK58bbr54YeVJeOKJHUqSCegMoxsA7gQUORAA/s1600/rocket.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGiKDMTfN9KtPRUlSJWqce0xpm9nuPUUkiM2c1SdcxyHIdK9jPljuuMYCJDPXEM_HRjhyW0qA9WMQwakwTNxhwE8pOrJ3tdm-A1bLiwKxK58bbr54YeVJeOKJHUqSCegMoxsA7gQUORAA/s1600/rocket.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSA9D-R9nn3HP6Rxr1nDTQU-hi4dsPd-O7DPac3l1hrj2v7W6j2vbtvRq6fajJjviymfjd270dPfgkx5dW0RfCJ__eXpRtU7VbG8iIPqcnw0jLubr9eR1IDFZAKDV-a5uL1U-rS4V_zxY/s1600/glove.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSA9D-R9nn3HP6Rxr1nDTQU-hi4dsPd-O7DPac3l1hrj2v7W6j2vbtvRq6fajJjviymfjd270dPfgkx5dW0RfCJ__eXpRtU7VbG8iIPqcnw0jLubr9eR1IDFZAKDV-a5uL1U-rS4V_zxY/s1600/glove.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YpvwUmwruSxPlDfigOqQdx2GMDgJsbIKjgSMNFqQtM6oC_s661o997bLoBJQ-mUGPYktleSpv71x9VaMqd3C0C6CZpw2ZmXudkbfEptlyYJYkWofptNx0xVb_uEzIkkA_w1y6eGzePE/s1600/car.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YpvwUmwruSxPlDfigOqQdx2GMDgJsbIKjgSMNFqQtM6oC_s661o997bLoBJQ-mUGPYktleSpv71x9VaMqd3C0C6CZpw2ZmXudkbfEptlyYJYkWofptNx0xVb_uEzIkkA_w1y6eGzePE/s1600/car.jpg" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjprtrgrCqVkxngape0dHYzh5pEZKyTHKgxh7cHai_dL_9eyIXM1P75UDA8Ql-CIGFns8kLvqIbOzy5VZ72b-PTfjUuuH0Hv1S2qtMbJ__6m7vW8SKzII21T_LdpbLeFqGT4NaM73H462Q/s1600/truck.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjprtrgrCqVkxngape0dHYzh5pEZKyTHKgxh7cHai_dL_9eyIXM1P75UDA8Ql-CIGFns8kLvqIbOzy5VZ72b-PTfjUuuH0Hv1S2qtMbJ__6m7vW8SKzII21T_LdpbLeFqGT4NaM73H462Q/s1600/truck.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjehzoABextlSqcrEsWI7pvklitauHUOcvoP_50w3o1e2IhtqBg-nkYAX0vpTfTes7Z3s13FptJd1UFHBrPjwElW7yiNdI0nlcL7tdz5ClTN0OWUsAbA99sEnDJXPaAiFoTZamogSfI-O4/s1600/train.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjehzoABextlSqcrEsWI7pvklitauHUOcvoP_50w3o1e2IhtqBg-nkYAX0vpTfTes7Z3s13FptJd1UFHBrPjwElW7yiNdI0nlcL7tdz5ClTN0OWUsAbA99sEnDJXPaAiFoTZamogSfI-O4/s1600/train.jpg" /></a></div>
<br />
<br />
<br /></div>
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F4.bp.blogspot.com%2F-2DsiHH1hDsc%2FVBte8Pzg9BI%2FAAAAAAAACow%2FPm7CmBN4Pz0%2Fs1600%2Fcar.jpg&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6YpvwUmwruSxPlDfigOqQdx2GMDgJsbIKjgSMNFqQtM6oC_s661o997bLoBJQ-mUGPYktleSpv71x9VaMqd3C0C6CZpw2ZmXudkbfEptlyYJYkWofptNx0xVb_uEzIkkA_w1y6eGzePE/s1600/car.jpg" -->Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-19407100783287448622014-09-24T08:00:00.000-04:002014-09-24T08:00:04.339-04:00Subscription Box Review - Nibblr<div dir="ltr" style="text-align: left;" trbidi="on">
As you know, I recently tried (and raved about) Graze.com. While on the hunt for boxed mystery snacks, I also came across Nibblr.<br />
<br />
Nibblr is a similar concept, so I gave it a try. I got my first box for free, and so can you - just go to <a href="http://www.nibblrbox.com/">http://www.nibblrbox.com/</a> and enter the code <span class="st">FBFIRSTBOX (full disclosure - I just googled to find a free code, and this one worked for me).</span><br />
<br />
In fairness, I had already been through the process with Graze, so I wasn't exactly looking at this with fresh eyes. When I look at Nibblr, I can't help but compare to Graze.<br />
<br />
Nibblr's website is not as easy to navigate. I found it more difficult to categorically remove snacks (things too high in calories, things that contain nuts, etc). I also found that I wasn't enticed by many of the snacks offered, so I trashed a lot of them. I was downright annoyed by how difficult it was to determine what was in each snack - the information is all there, but it takes multiple clicks to find it. And a nitpick - there are <i>a lot </i>of peanuts, which I don't eat. There's no referral bonus system, so while Nibblr offers a free box to new signups, there's no incentive for me to refer you. Try one, or don't, it doesn't matter to me.<br />
<br />
On the positive side, Nibblr is definitely more "artsy" - the box is very cute and it came with a cute little mini-poster.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifrFhWcpkYMjEXHm54s_Hl-mrYzn0tQEQi6nkWNoloN3sBhBKAFa8a2ehkh5l6EGRUklSn2xsSzPzDaqikbcL-VPY_jxVyaKQ5O10q6F1srcUqIgKmkzvo8WXL0FGD-ZzGJVpGNT3qMfY/s1600/nibblr.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifrFhWcpkYMjEXHm54s_Hl-mrYzn0tQEQi6nkWNoloN3sBhBKAFa8a2ehkh5l6EGRUklSn2xsSzPzDaqikbcL-VPY_jxVyaKQ5O10q6F1srcUqIgKmkzvo8WXL0FGD-ZzGJVpGNT3qMfY/s1600/nibblr.jpg" height="298" width="400" /></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihTtwCvJJQs5ynzFSzceC8-U0XDwiEZq93k2oQaRKyECvzu5_R_ch33943ZOAPukXN5YGIAEpKRiA_mN2AndZXuUdazxtevN_NGlGOIvf0pPtJGv9FeD3p9vswiFLKFkzZ4QyUyzgWWTg/s1600/hangry.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihTtwCvJJQs5ynzFSzceC8-U0XDwiEZq93k2oQaRKyECvzu5_R_ch33943ZOAPukXN5YGIAEpKRiA_mN2AndZXuUdazxtevN_NGlGOIvf0pPtJGv9FeD3p9vswiFLKFkzZ4QyUyzgWWTg/s1600/hangry.jpg" height="640" width="476" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yes it is!</td></tr>
</tbody></table>
I do like that the site shows how others are rating each snack. Though it does make me wonder if I'll hate something that shows up in my box if only 29% of other users liked it.<br />
<br />
My box came with the following snacks. I don't know if it was coincidence, but all four of my snacks were only 2 PP+ each<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg32u7CaWuikS3K9YFSLpPPJuHeAa7iDPWu20vei5grjC1I7j6UjqYaGjUwv2qgkls3W1htj8sOXaPWYp3bPqLHqNr8P7w_Q1n3XmaaEOhgYB63NNsotqWVK-95FvFv6PokVECz3Nq5a4/s1600/nibblr2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg32u7CaWuikS3K9YFSLpPPJuHeAa7iDPWu20vei5grjC1I7j6UjqYaGjUwv2qgkls3W1htj8sOXaPWYp3bPqLHqNr8P7w_Q1n3XmaaEOhgYB63NNsotqWVK-95FvFv6PokVECz3Nq5a4/s1600/nibblr2.jpg" height="480" width="640" /></a></div>
<br />
<b>Cheddy at the Ready</b> - 2 PointsPlus - cheddar cheese crisps. 40% of others loved it. I don't know who these people are, because I really disliked them. They had a really bitter aftertaste - almost like burnt cheddar - and were way too hard and crunchy to be pleasant. I had high hopes, but I ate half of one and threw the rest in the trash. Still craving cheese, I tried the next snack.<br />
<b>Cheesy Crostini</b> - 2 PointsPlus - Cheddar asiago crisps. 48% of others loved it.
These were ok. The asiago flavor definitely comes through. There's a
bit of a spicy kick to them. Texturally, they're good - not jawbreakers like the Cheddy at the Ready. I ate them because they were available and I wanted something cheesy, but I would likely not seek these out again on purpose.<br />
<b>Neopolitan </b>- 2 PointsPlus - dried strawberries, shortbread
cookies, and cocoa ladyfingers. 56% of others loved it. Eh, I didn't
hate it. Similar to the Cheesy Crostini, I ate it because it was open,
but I wouldn't seek it out. The shortbread cookies were pretty
flavorless. The cocoa ladyfingers - also fairly flavorless. Most of
the flavor comes by way of aftertaste. It wouldn't be such a problem if
it weren't for the strawberries. They're freeze-dried, but they taste
stale and mushy. Blegh. Freeze-dried fruit should be <i>crunchy</i>, Nibblr! Fail! <br />
<b>Punchy Fruit</b> - 2 PointsPlus - Pomegranite infused cranberries,
pineapple, and passionfruit lemon fruit pieces. 29% of other users
loved it. This was my favorite, by far. I actually wish I could get
this from Graze. Raw pineapple gives me Oral Allergy Syndrome - itchy
mouth, rash, sometimes hives - but the dried pineapple didn't bother me
and was actually pretty flavorful. The pomegranite cranberries were
delicious - a really sweetened-up version of a cranberry, which isn't
normally something I enjoy. The passionfruit lemon fruit pieces were
interesting - texturally, kind of like a fruit snack, maybe a bit
softer. Very tasty. All in all, just a nice fresh fruity snack. <br />
<br />
<br />
In conclusion, I will not be keeping this subscription beyond the initial free box. I'm glad I didn't try this <i>before</i> I found Graze - it might have soured me on the subscription snack box idea entirely.<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-9221700180821697842014-09-17T08:00:00.000-04:002014-09-17T08:00:07.194-04:00Subscription Box Review - Graze.com<div dir="ltr" style="text-align: left;" trbidi="on">
Recently, I stumbled across Graze.com - a subscription box service that offers a healthy alternative to the usual snacktime staples (chips, cookies, and whatever other crap I can find). The twist is that your snack boxes are a surprise - you can go onto the website to view the snack options, trash any snacks that don't appeal to you, and rate the remaining snacks on a try/like/love scale. Then, each box is a random selection using their crazy algorithm that takes your ratings into account.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4nkXKJrdkVlGt2rZMrlgL9VWgbPCszdL0qHIT_DO41UvnLGCYAScU3rKb5nKMw9M94f4JM5gYbQ1zwMetGKmFNBmF5-PQfdbawupgMe9NmEajvrUurX6PW4JCVFo61Z7QmHGONGS-fno/s1600/graze.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4nkXKJrdkVlGt2rZMrlgL9VWgbPCszdL0qHIT_DO41UvnLGCYAScU3rKb5nKMw9M94f4JM5gYbQ1zwMetGKmFNBmF5-PQfdbawupgMe9NmEajvrUurX6PW4JCVFo61Z7QmHGONGS-fno/s1600/graze.jpg" height="300" width="400" /></a></div>
The first thing I did was trash anything with mango (I'm allergic), peanut (gross), and walnut (Aidan's allergic, and that one makes me nervous enough that I don't like to have it in the house. (On an allergy note - everything's packed in the same kitchen, so keep that in mind.). I set my box frequency to every 2 weeks (weekly is also an option). Then, I chose to receive a Calorie Counter box, so that all of my snacks would be 150 calories or less. I'm on Weight Watchers, so this has meant that all of my snacks have been 2, 3, or 4 PointsPlus. <br />
<br />
If you'd like to try it, the below link (or the code RXNYN96TU) will get you a FREE first box, and if you stick with the subscription, your fifth box will be free too!<br />
<br />
<a href="https://www.graze.com/us/p/RXNYN96TU"><b>https://www.graze.com/us/p/RXNYN96TU</b></a><br />
<br />
So, this is all well and good, but <b><i>how's the food???</i></b><br />
<br />
My first box arrived in just a few days, and I was really excited to try it. Knowing we were going to the hospital soon, I decided to save my snacks for our stay, and ordered another box immediately (very easy to do) so that I'd have plenty of healthy snacks to munch on while cooped up in CHOP. My second box arrived the day before we left for the hospital - well timed, Graze!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYzKK8PqPXos02NbAAKWcZsn3R2JrokL8lg77TqJZf9K9fbflLJC-ZPxEFVkoCqRwJDbYj0GXn1kPwL2IcEbZSW8_XL62s6DZ7PgPd5X9y3_u8QNhyzL1Knh7Et9Fbp9K-FBNk1YzUf0g/s1600/graze2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYzKK8PqPXos02NbAAKWcZsn3R2JrokL8lg77TqJZf9K9fbflLJC-ZPxEFVkoCqRwJDbYj0GXn1kPwL2IcEbZSW8_XL62s6DZ7PgPd5X9y3_u8QNhyzL1Knh7Et9Fbp9K-FBNk1YzUf0g/s1600/graze2.jpg" height="640" width="476" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Box 1</td></tr>
</tbody></table>
<b>Garden of England</b> - 2 PointsPlus. This is a mix of strawberries, apples, and blackcurrants. They are dried fruits, but not freeze-dried. Everything is sweet and fresh. The apples and blackcurrants are nice and tart. The strawberries are sweet. It was what I expected it to be. Nothing amazingly surprising, but a nice sweet 2 PP+ treat. The apples are my favorite part. I rated this as a <i>Like </i>- I'd be happy to receive this occasionally.<br />
<b>Peach Cobbler</b> - 3 PointsPlus. This is a mix of peach strings, honey almonds, yogurt-covered sunflower seeds, and amaretti drops. The first thing I noticed was the smell - it smells like fruit snacks. I think it's because of the peach strings, which are texturally somewhere between a fruit snack and a fruit leather. They taste great. The honey almonds are decadent and delicious, and I liked that they were chopped almonds - not whole. The yogurt seeds are mouthwatering - literally. And the amaretti drops - the most mysterious of the ingredients - turned out to be a sweet but not-too-sweet almond cookie. Similar to the sponge pieces found in some of the other snacks. I loved each individual ingredient, but the pieces were pretty small, so I wound up eating handfuls at a time - resulting in many Perfect Bites, which were pretty much snacking heaven. This snack reminds me a lot of the <b>Hot Cross Yum</b> (see Box 2, below) - it felt like I was eating a super decadent treat, but somehow it was only 3 PointsPlus. I rated this<i> love</i> and hope to see it often.<br />
<b>Toffee Apple </b>- 2 PointsPlus - This is dried granny smith apples with toffee sauce for dipping. The sauce is amazing - thin enough consistency to be a good dipper. The apples are tart and tangy and go really well with the sauce. I rated this one<i> love</i> because this sauce is to die for, and at only 2 PP, it's a steal of a snack.<br />
<b>Morning Energizer</b> - 4 PointsPlus. This is a mix of cherry, pear, and walnut. I didn't intend to receive this, because it has walnuts and Aidan's deathly allergic. I must have missed it when I went through and trashed everything walnutty. But it's here, so I tried it. I was pleasantly surprised at how fresh the fruit tastes, and I think the cherries are a really good companion to balance out the bitter walnut. The Perfect Bite of all three is actually really delicious - enough so that I'm actually considering removing it from the trash bin and just bringing it into the office to eat away from Aidan.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG77zZNi6djuQF2KKMiqN0agqna4zs1eT1zdsHOe8gcXQkZCe8tw9Uh522rN658m3QTIdsJAIKlKkCCGocMeWP1i0PLjJdTc9w337_PN4OXQAh3YtgZJTOgyBs-utxGBKS1oZnJaX5Jek/s1600/graze3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG77zZNi6djuQF2KKMiqN0agqna4zs1eT1zdsHOe8gcXQkZCe8tw9Uh522rN658m3QTIdsJAIKlKkCCGocMeWP1i0PLjJdTc9w337_PN4OXQAh3YtgZJTOgyBs-utxGBKS1oZnJaX5Jek/s1600/graze3.jpg" height="640" width="478" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Box 2</td></tr>
</tbody></table>
<b>Banana Caramel Dippers</b> - 4 PointsPlus - These are banana shortbread cookies with caramel toffee sauce for dipping. I was more excited about this than any other Graze snack. Cookies with caramel sauce? Yes please! On their own, the cookies are a true shortbread - not terribly sweet, flaky and crumbly, but you definitely do get a strong taste of banana. And it tastes like <i>real</i> banana, not kinda-banana. The caramel sauce is pretty tasty too - thin enough to make it a good dip for a crumbly cookie. Together, the cookie and the sauce are a divine treat. Thankfully, they're portion-controlled, because I could eat this all day. Easily rated this one <i>love</i>. I wish the sauce container weren't so narrow - it makes it harder to humiliate myself by licking the inside. Note - I said harder. Not impossible. Side note - I kind of feel like I'm eating my feelings with this one. I think my grandma would have loved this snack.<br />
<b>Hot Cross Yum</b> - 4 PointsPlus - This is a mix of orange-infused raisins, sponge pieces, and cinnamon honey almonds. Whatever sorcery they use to infuse fruit with the flavors of other fruit is insane (in a good way). These are the orangiest raisins I've ever tasted! I had no idea what to expect out of sponge pieces - which are used in a few Graze snacks - but essentially they are a slightly eggier-tasting Nilla Wafer, which doesn't sound all that appetizing, I know, but it works. Cinnamon honey almonds are fabulously decadent candied nuts. I truly don't know how this is only 4 PP+. The Perfect Bite (one of each piece) is amazing, but actually, I really love each ingredient on its own, too. I rated this <i>love</i>. It felt like eating cookies and candy, but in a controlled and still satisfying portion. I'd be happy to receive this often.<br />
<b>Raspberry Coconut Muffin</b> - 4 PointsPlus - This is a mix of raspberry cranberries, coconut, amaretti drops, and almond slices. The first thing I noticed was a delicious tropical smell, which has to be the coconut and almond. Seriously, this is the most fragrant of the eight snacks I've tried. I think I trashed almost every snack containing coconut, but I'm rethinking this decision, because these coconut flakes are really good! Normally, I think coconut flakes taste suspiciously like hair - but these taste fresh and coconutty. Awesome! I fell in love with amaretti drops while enjoying Peach Cobbler, so those are a win. The raspberry cranberries are a delightful treat - I continue to be amazed at the fruit infusion technology. And the almond slivers add some protein in to make this a really filling snack. I love how the sweet, tart raspberry cranberries balance out the nutty almonds and the coconut. It's at the higher end of my snack rage, coming in at 4 PP+, but the portion seems generous. I <i>love</i> it - please send more! <br />
<b>Super Berry Detox</b> - 3 PointsPlus - This is a mix of blueberries, cranberries, goji berries, and green raisins. As usual, everything tastes really fresh (I always worry with dried fruit that it will taste - you know - <i>dry</i>). The portion size on this feels pretty generous, actually. I like the green raisins, cranberries, and blueberries individually, but it turns out that goji berries (which I'd never tried before) are not terribly delicious on their own. I wish there were more blueberries in the mix, and fewer goji berries. But I'm sure it's the goji berries doing all of the heavy lifting, nutritionally-speaking. This mix is a full serving of fruit, and a "good source" of iron and Vitamin A. Whatever that means. I rated this "trash", because I know how many other, more delicious options Graze has to offer. More Peach Cobbler! Fewer goji berries!<br />
<br />
What I found was that these feel so much less "empty" than eating 3-4 PointsPlus by way of a 100 calorie pack of cookies or crackers. Sure, points are points, but I feel better about using mine on something with healthier ingredients. Would I use these snacks to replace fresh fruits and vegetables or lowfat yogurt and cheese, all of which I currently snack on frequently? Of course not. But these are a great option for the times when those fresh and refrigerated options aren't available or appealing. It's something different, something additional. To be honest, a challenge that I have on Weight Watchers is actually using up all of the points I've been given. At the end of the night, I hate the idea of eating just to eat, so I don't, but it's not uncommon for me to go to bed with points uneaten. <i>Many</i> points uneaten. Adding a few graze snacks into my week may be just the thing!<br />
<br />
<b>Graze note: Go online and rate rate rate! Rate the snacks you get, and check often for new snacks! </b> I would love to see new snacks pop up when you log in, so that you can rate them before they show up in a box. I want the chance to "catch" them before they show up in my box, if I wouldn't want them coming. But I suppose it's an incentive to log in often and see what's new. I might have to bump up my frequency to weekly - by the end of the second week, I'm <i>really</i> craving a new box. </div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-81172546853133584242014-09-11T10:50:00.001-04:002014-09-11T10:50:45.572-04:00Inpatient - Endocrinology - Day 4<div dir="ltr" style="text-align: left;" trbidi="on">
This post will be blessedly short. On day 3, we felt like we had his Endocrinology stuff figured out as best we could, but true to form, Aidan's motility tanked, because why wouldn't it? We spent one last night tucked into an impossibly tiny hospital crib up on 5 West. Did we sleep? Nah. But we were together, so who needs sleep?!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp8kn-6IiDm-8dCN2POlnvUQgpG3rXAkot4pmjfPNd_c0eTfDnjL8DY2EZ6pU98Z6mtkdZgxQawT5xp3eWI5I3kiJt2cPV6Mrs_Jd3y8qijk0y62EBeT4NrZ8xgJ2slMKL2YVL3psXGz0/s1600/sleep.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp8kn-6IiDm-8dCN2POlnvUQgpG3rXAkot4pmjfPNd_c0eTfDnjL8DY2EZ6pU98Z6mtkdZgxQawT5xp3eWI5I3kiJt2cPV6Mrs_Jd3y8qijk0y62EBeT4NrZ8xgJ2slMKL2YVL3psXGz0/s1600/sleep.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this guy</td></tr>
</tbody></table>
<br />
Saturday morning found Aidan feeling <i>much better</i>. The docs had given him Senna, which is what GI recommended the last time we were in. It worked great. After two doses, things were moving again, and we felt good enough to get a move on.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9sH5sOhu-8fFGgtEil3nkQ4r93mYmAWd8FOqkg4dHJbPTpbKkrUAo8ccA5pjhw7viSs3DAvZWG_EsRgC_Nx3hApIf37qCPWA8UX6sYUAQ4m-NsZXuV8xHuxTFoi0oF4QrtlLp5f4yACY/s1600/leaving.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9sH5sOhu-8fFGgtEil3nkQ4r93mYmAWd8FOqkg4dHJbPTpbKkrUAo8ccA5pjhw7viSs3DAvZWG_EsRgC_Nx3hApIf37qCPWA8UX6sYUAQ4m-NsZXuV8xHuxTFoi0oF4QrtlLp5f4yACY/s1600/leaving.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See this forlorn face? He was sad to leave because he <i>likes</i> it there.</td></tr>
</tbody></table>
All in all, it was such a productive trip. We learned how to better manage Aidan at home (no more breaks from feeds, no more fasting at home before procedures!). We learned what to look out for and how to better recognize when he's in trouble with respect to his blood sugar. Every hospital stay finds him less anxious and fearful, and more trusting of doctors and what they're doing to help him. And, sadly, we learned not to just trust that CHOP will have the nutrition he needs. I wish that weren't the case, but the fact is, we don't need the added stress every time we go there. We need to start bringing our home supply.<br />
<br />
Thank you - all of you - for all of your well-wishes and thoughts while we were at CHOP this time. While he's not old enough to understand, I certainly am. It means the world to me. We are happy to be home, and even happier that we made it home in time for this year's Strides for Safe Kids Food Allergy Walk and Expo!<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-66359158041023348692014-09-05T23:38:00.002-04:002014-09-05T23:38:57.521-04:00Inpatient - Endocrinology - Day 3 (Come for the Endo, Stay for the Gastro!)<div dir="ltr" style="text-align: left;" trbidi="on">
Last night was a long one. Since we didn't begin the IV fluids until 10pm, we couldn't start weaning the formula until then either. So, starting at 10pm, we began weaning his formula by 14ml and checking his BG and ketones every 30 minutes. I don't know how our poor nurse (Annie) got anything else done all night, honestly. The feed wean went from 10pm to midnight, and his BG went from 113 to 86, ketones holding steady at 0.2. All good. In the next half hour, he dropped to a BG of 74 (while still on IV dextrose) and his ketones climbed a bit, reaching 0.5 (still fine). I vaguely remember a BG of 70 at 1:30am, while we were weaning down the dextrose, and then I drifted off to sleep sometime shortly thereafter. Kind of. I was in and out every time Annie, bless her heart, continued to check his BG and ketones all night long. She later told me that his ketones were slowly climbing during that time.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw-rk_FsQUUVJs5qvrDyG32ogbiCE-wZAhTO_sp9U-vYMU2Mg9dMeF992pd8rdBW3e5-qvp877A1OCBjtTnkYSH42C2c1AP2JRINvpQgSh2N5Ci5R9oMqs43P-tPQau4ObfND_wOExEFM/s1600/bed2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw-rk_FsQUUVJs5qvrDyG32ogbiCE-wZAhTO_sp9U-vYMU2Mg9dMeF992pd8rdBW3e5-qvp877A1OCBjtTnkYSH42C2c1AP2JRINvpQgSh2N5Ci5R9oMqs43P-tPQau4ObfND_wOExEFM/s1600/bed2.jpg" height="300" width="400" /></a></div>
<br />
<br />
Annie's party ended uneventfully at shift change (7am) and Aidan was holding steady around 70. Our morning nurse got him at critical on her very first check - 46. When she rechecked him, he was 51, and when she sent off bloodwork for confirmation, it came back at 51. Just a hair over "critical." So the fast continued. His checks at 8:30 were in the low 50's. Then, at 9am, a new wrinkle. BG 51, but ketones were suddenly at 3.3. WHAT? Where did that come from? The 9:30 check showed BG 41, ketones 3.8 - so the fast officially ended, both for low BG and high ketones. Things happened pretty quickly after that - the lab confirmed his BG at 41, and the first round of bloodwork went in. He got a shot of Glucagon (a hormone that's supposed to bring up his BG quickly) at 9:45, which immediately made him nauseous, and didn't even help. He fell down to 33 by 10:00, and they decided to halt the test and put him back on IV dextrose. 15 minutes later, on IV dextrose, he was up to 50, which is still too low, but heading in the right direction. He spent the rest of the morning slowly working his way back up to 70 on IV dextrose.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXSp-RWpCGpaMllSLXOMJXwixw3XAhiWitlaJjv0utC6wnx44gkgFCsvnt0fjoDXr6kqQOH2zDrQ0jj51N_kFgfBZj960VkDiD0au737-T54B9iDT_bBv1cwXVkItKBTXARxz8RgF88Fc/s1600/bed.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXSp-RWpCGpaMllSLXOMJXwixw3XAhiWitlaJjv0utC6wnx44gkgFCsvnt0fjoDXr6kqQOH2zDrQ0jj51N_kFgfBZj960VkDiD0au737-T54B9iDT_bBv1cwXVkItKBTXARxz8RgF88Fc/s1600/bed.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not a happy camper</td></tr>
</tbody></table>
Dr. Langdon decided to go ahead with some growth hormone labs, so those were drawn an hour after the Glucagon and every 30 minutes after that until lunchtime, when the final labs were drawn and feeds were restarted. The results that could come back immediately came back around 4pm - it doesn't look like he has a growth hormone deficiency - or at least not one severe enough to be the cause of his hypoglycemia. So, this means a couple of things.<br />
<br />
1. This tells us that Aidan's form of hypoglycemia is called ketotic hypoglycemia. This basically just means that his body doesn't tolerate fasting, and while his blood sugar falls, he produces ketones, which are <i>no bueno</i>. <br />
<br />
2. We still don't have any answers about his poor growth. I guess we'll have to take that up with his Endocrinologist when we follow up with her in a few weeks for the rest of the bloodwork results.<br />
<br />
The plan is to remain on 24/7 feeds, since fasting proves dangerous to him, but it's thought that with a careful wean, Aidan could probably tolerate up to 4 hours off feeds safely. He absolutely cannot just halt feeds (you know, exactly the thing we were doing). We've been instructed that if he's sick and not tolerating feeds for more than 2 hours, we are to take him to an Emergency Room for IV dextrose. We have a letter explaining his condition as "severe" and giving treatment protocols for him. It uses intentionally terrifying phrases like "seizures" and "brain damage" when explaining the consequences of untreated hypoglycemia. Honestly, it's kind of sobering and gives a new air of fragility to an already nerve-wracking kid.<br />
<br />
The way he acted with critically low BG and high ketones makes me concerned that his sugars are low and ketones are high from time to time at home while he's <b>on feeds</b>, and we're not aware, because how on earth would we even know? His face was flushed but clammy, he was acting really tired, and he was insistent that he's "really thirsty" - which is something that he <i>very rarely</i> says. Except for the times that he acts <b>exactly like that</b>, late at night. Or maybe he's just 3 and manipulative. Ugh. I hate this.<br />
<br />
<br />
We'll be checking his BG a few times a day, and probably also overnight, with additional checks anytime he's symptomatic. I know that we are okay, and we can do this. There's just suddenly so much more to think about. How will we prep him for scopes? What about tube changes? He needs to go NPO so he can be sedated. But now we can't safely go NPO. What happens when his pump breaks (a-g-a-i-n) and Homecare says they'll be there in "a few hours"? Do we wait for him to crash? Proactively bring him in for dextrose, knowing that he'll definitely crash? <br />
<br />
The biggest positive is that we're told most kids grow out of this. We get to repeat this little slumber party next year, to see if he can pass the 36 hour fast. That seems so absurdly impossible right now. But eventually, most kids do.<br />
<br />
So Endocrinology is ready to release us, and we'll be going home tomorrow morning sometime. We're spending one more night for a GI concern - his motility seems to have slowed way down and we're worried about heading home without being sure he's going to continue tolerating feeds, <i>especially</i> now that <b>not</b> tolerating feeds is <i><b>not</b></i> an option.<br />
<br />
It's a good thing he's cute...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDXC1lP29s0ySt5u1WmXLHecfLpMFBcefo3XkapQrn9L4EZOUNHb9ane4JGe80Ivdq_7UkfcPkRbxe1s0G4jCuURol4onpbqwoJxf-BTL3bdm-MyqMe7x6r-0qtDpicnbMQlmeIGlLmIU/s1600/bed3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDXC1lP29s0ySt5u1WmXLHecfLpMFBcefo3XkapQrn9L4EZOUNHb9ane4JGe80Ivdq_7UkfcPkRbxe1s0G4jCuURol4onpbqwoJxf-BTL3bdm-MyqMe7x6r-0qtDpicnbMQlmeIGlLmIU/s1600/bed3.jpg" height="400" width="298" /></a></div>
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-21438109863646031092014-09-04T22:49:00.000-04:002014-09-04T22:49:19.316-04:00Inpatient - Endocrinology - Day 2<div dir="ltr" style="text-align: left;" trbidi="on">
The doctors rounded our way around 9:30, and came up with the day's plan. It's always interesting to hear someone else give your kid's story - what's important and relevant, and what's not. This part, at least, is familiar enough. Grumpy old doctors, residents trying to impress them, nurses, and whoever else joins the cluster all gather around the door and discuss your child.<br />
<br />
The plan was to start an IV at some point today so that later tonight, we could wean down his feeds and start the fast. Silly me, I thought we'd do the fast <i>today</i> and not <i>tonight</i>. But it sounds like actually we'll be doing more of the same today as we did yesterday - continuing on normal feeds while checking his blood sugar every three hours. His blood sugar was stable overnight, though it fluctuated between 79 and 110. I still wonder why it goes down to the 70s when he's on feeds.<br />
<br />
The Endocrine doctor, Dr. Langdon, came by around 11:30 to discuss Aidan and the plan. He has a low IGF1 level (40) - "impressively low for a three year old" - but they don't know if it's low because he's got a growth hormone deficiency, or because he's malnourished (well isn't that just a knife in the gut?). He is short for his parental curve, but he does seem to have good growth velocity. He was born near the 50th percentile, fell to the 10th percentile by 2 months old, hovered between the 3-5th percentile until he was 1 1/2, and has been in the .5-1st percentile for the past 2 years. So yes, he's fallen, but he's remained on his curve for the past two years. There are some clinical signs of growth hormone deficiency that he doesn't display, but others that he does - so there are mixed indications. We really don't know what to think at the moment.<br />
<br />
I have trouble believing he's malnourished, honestly. The formula is supposed to be nutritionally complete. He's finally putting on weight. Can he really be malnourished? Now I just have this image in my head of this guy, Dr. Langdon, shaking his head and saying "what a terrible disease" (the Eosinophilic Gastroenteritis). I immediately felt defensive, because we feel like we have it so well controlled. I just hope it hasn't been at the expense of his growth and development :-/<br />
<br />
Sarah from Nutrition came in to talk, and helped me feel better about the malnutrition thing. I don't know if he's been getting what he needs or not - I suspect he has been, because he's been gaining weight - but if he hasn't, it's probably because of a malabsorption-type issue. Not because we're not giving him what he needs. We've worked so hard to find a formula that works, and when we found it and fought for it and use it and <i><b>still </b></i>hear that may be malnourished - it's hard not to feel defeated. I hope the growth hormone stim test gives us more answers.<br />
<br />
You know what I forgot to mention? The whole hospital transitioned to Infinity pumps! I love this! I know exactly what the alarms means and how to shut them up! Yes, I know we aren't supposed to touch the pumps, but talk to me again at 3am when it's been alarming for 15 minutes and nobody's answered the nurse call button. Pausing the alarm is a perfectly reasonable course of action.<br />
<br />
The other reason this is awesome is that it gives us the opportunity to finish out the feed we brought from home while CHOP inevitably makes a debacle out of finding his formula. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJxesGy5EbdlYZTMBYkoEbUOZayX4hjJYT2qT8QgB-z1FrUnE6Pdu1x3D8K6-uEVI4vTtaeysXxt-yXO-zMKoBlyRShPjsu2Zk7dakSVMfXG0Gt1_KTja43OmtNiaxBM8i8f5-g_skDIY/s1600/pump.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJxesGy5EbdlYZTMBYkoEbUOZayX4hjJYT2qT8QgB-z1FrUnE6Pdu1x3D8K6-uEVI4vTtaeysXxt-yXO-zMKoBlyRShPjsu2Zk7dakSVMfXG0Gt1_KTja43OmtNiaxBM8i8f5-g_skDIY/s1600/pump.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Infinity Pump!</td></tr>
</tbody></table>
By awesome coincidence, CHOP is having a radiothon this week. There are activities all day today and tomorrow. We ventured out of the room at lunchtime to meet Elsa, who is evidently some uber-popular chick from Frozen. Aidan was unimpressed, to say the least. He did his best Joe Friday impression (am I dating myself?):<br />
<br />
<i>Who are you? What is this dress? Is that your hair? What are you doing here? Are you sick? Where's your tubie? Are you coming to see Dr. Liacouras? Do you have allergies?</i><br />
<br />
He then decided he was done with her highness, leaned in close, and said "<i>I would like to go find a canyon today."</i> And that was it. Little girls were <b><i>dying</i></b> to meet her, and he was so bored he couldn't even stand it a moment longer. Not long after that, someone started banging <b>cymbals</b> together - in the huge echo-y atrium - and Aidan was <i>done-zo. </i>He gave Spider-Man a once-over, nonchalantly informed him that "food is not safe for my mouth, I have allergies.", and hightailed it back up to his room. I'm not sure I'll be able to coax him out of bed again.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKkNkGbd_ApvTCZX9i_5d5ueBbHYVKyzY0fv6RN_lms23Hmc7TaxcE9dHgNTFKmZvnwScjfnq8MgxKm9bcCTpJK7W74NECTjUCpjxrCxCBvtIxzJgbOquuy_eyaA30h56wRQ04ehOQXPw/s1600/lobby.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKkNkGbd_ApvTCZX9i_5d5ueBbHYVKyzY0fv6RN_lms23Hmc7TaxcE9dHgNTFKmZvnwScjfnq8MgxKm9bcCTpJK7W74NECTjUCpjxrCxCBvtIxzJgbOquuy_eyaA30h56wRQ04ehOQXPw/s1600/lobby.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There is no such thing as too many of these pictures.</td></tr>
</tbody></table>
So that was today. Aidan's blood sugars were monitored all day while he was on feeds, to continue establishing his baseline. Around 7:00pm, the IV team came in and attempted to place two IV's - one to administer fluids, and the other for blood draws. He needs two, because they don't want the blood they draw to be potentially contaminated by anything they push in through his IV - so they can't draw blood from the same site that they're using to administer something like Glucagon or Dextrose.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeUqFFI6ooC9K3F4kr8r5BZOKAMJ0dQ3OPxRAtMrwtoqPUN8g1FraE0YTdXAL8u4SA_ZRTtPNrCu6Mhydd2R-zVUaBTSntvQxxV0VmeaiU0UcTEmM_MTxuVRN7mXDBGWsWcVF9loYxHD4/s1600/hotpacks.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeUqFFI6ooC9K3F4kr8r5BZOKAMJ0dQ3OPxRAtMrwtoqPUN8g1FraE0YTdXAL8u4SA_ZRTtPNrCu6Mhydd2R-zVUaBTSntvQxxV0VmeaiU0UcTEmM_MTxuVRN7mXDBGWsWcVF9loYxHD4/s1600/hotpacks.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hotpacks - we hate them!</td></tr>
</tbody></table>
<br />
I said <i>attempted</i> because, as we all know, Aidan is the worst stick in the history of bad sticks. They blew three veins before finally getting their fourth (and final) one placed. That one will be used for blood draws, but we still needed something for IV fluids. So they gave him an hour off, then hotpacked his left arm for an hour, and tried again. This was when things got sad - Aidan realized he had no hands left to play with toys, iPads, or crayons. It was a long hour.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGMmyotjyQnVD8yztI4jM1x19mWU7a9_5VSNBb2LyGjQrweJBWEqEQk-j0pyCPm52_HEn2zVNGfX4i6spqi8NBVJBI6Pw7gb6IgWs1eYNF93bgW5kSLGo8uT8_BVBJ4zAcYJ207q2UrY4/s1600/sad.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGMmyotjyQnVD8yztI4jM1x19mWU7a9_5VSNBb2LyGjQrweJBWEqEQk-j0pyCPm52_HEn2zVNGfX4i6spqi8NBVJBI6Pw7gb6IgWs1eYNF93bgW5kSLGo8uT8_BVBJ4zAcYJ207q2UrY4/s1600/sad.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sad boy</td></tr>
</tbody></table>
When IV team came back, they meant <i>business</i> and they got that IV placed like it was <i>their job</i>. Which, you know, it is. But still, it was pretty great. It really isn't their fault that his veins are so awful. So now he's pretty incapacitated and looks fairly pathetic.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbXUmIQyMAcg8gft0Fx-h2ATnIRnPUbjyMmIWn2TM9edXbCjXVoVnSraS7odY-j2vEMhlZLkqLS4xey2RCMG82CuJ1TKqAwaL4oOGWXMKVYSt71uObyljdHrV15uEgqCG5dSytpU8GqN8/s1600/sad2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbXUmIQyMAcg8gft0Fx-h2ATnIRnPUbjyMmIWn2TM9edXbCjXVoVnSraS7odY-j2vEMhlZLkqLS4xey2RCMG82CuJ1TKqAwaL4oOGWXMKVYSt71uObyljdHrV15uEgqCG5dSytpU8GqN8/s1600/sad2.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He's not sleeping, he's just hamming it up, and refusing to look at me is sadder than anything.</td></tr>
</tbody></table>
We'll start up his fluids and hopefully get this fast process started soon. It's supposed to include weaning his feeds down over 2 hours, and then weaning his fluids down. During that time, we'll be checking his blood sugars hourly (potentially half-hourly) and waiting to see how long he lasts before going low (70) and then critical (50). When he goes low and/or critical, there is bloodwork that needs to be drawn immediately (hence the second IV).<br />
<br />
My worry with this approach is whether we'll be able to recreate what we saw a few weeks ago. We don't normally wean him down over 2 hours, while keeping him on IV dextrose, which we then wean down. Which they know, so I'm sure they have their reasons. I just hope we get some information that helps us in our daily life, you know?<br />
<br />
One more picture for the night... It's been a really rough night with way too many needles, and it's all been really unfair to him, but you know what? Nothing gets him down for long.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5ldxzFHKcbmlipENs9Hjd5o8aqDc0qHqAZRtt7N8gg5FC1WSMpZH8egJ8A0r0H1naHu3Kt6PodGdONI-J6qlwB7yvzUBWoLRHEXJD93EWmmcnKLVEMLtK2xtzdb7esObP-eeQs1hRHxk/s1600/hangingin.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5ldxzFHKcbmlipENs9Hjd5o8aqDc0qHqAZRtt7N8gg5FC1WSMpZH8egJ8A0r0H1naHu3Kt6PodGdONI-J6qlwB7yvzUBWoLRHEXJD93EWmmcnKLVEMLtK2xtzdb7esObP-eeQs1hRHxk/s1600/hangingin.jpg" height="400" width="298" /></a></div>
</div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-36640010994086215842014-09-03T23:33:00.003-04:002014-09-03T23:33:50.355-04:00Inpatient - Endocrinology - Day 1<div dir="ltr" style="text-align: left;" trbidi="on">
A planned admission is such a different animal, and yet really, it's all the same zoo.<br />
<br />
We arrived early enough to have the luxury of taking our time as we schlepped all of our gear through the hospital. I felt 50% absurd for actually bringing <i>luggage</i>, but also 50% justified, because I know that we're going to be here for a few days, and I'm a human being that needs food, clothing, and the occasional shower. It makes perfect sense that I might <i>pack</i> those things in a <i>bag</i> and bring them with me when I arrive. It's just that it adds this air of "vacation" to the whole experience and it feels so inappropriate.<br />
<br />
Anyway, I let Aidan pick out a treat from the gift shop - he went with a Doc McStuffins magic ink book - and we went to the Asplundh Center in the Main Atrium for Admissions Registration. We answered a few questions and I signed some papers - I assume this is the stuff I normally do bleary-eyed and half asleep in the ER at 3am while awaiting a bed on 5 South. It was downright luxurious to kick this party off 12 hours earlier in the comfort of a quiet room that didn't smell like the previous occupant's vomit.<br />
<br />
We had a short wait while they got his room ready - namely, swiped a crib from some other room, because I know, he's a million and should be in a bed by now, but get off my back, okay? - and then we headed up to 5 West, where we settled into Room 9. We'd been warned that the rooms up on the Endocrine floor were small and not private - so we were prepared for the worst - but actually, no complaints here. Ours is small by 5 South standards, sure, but rooms up in Gastro are pretty huge (I've always wondered why. Were they meant to be doubles?) and it's definitely private.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK8dr5rt04jfEcdb3vmvYzc-VrODa3ld-QgNaBlvyHb2-gKkYiCuaiZYTZnIIxKtVX09_ANAVxy5ytatJ2j_GemJFDnGV0hUz_htNraTKmMSR6f7I0rs5vZ0IsWypFTTypL5oJaNyBAWw/s1600/5W9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK8dr5rt04jfEcdb3vmvYzc-VrODa3ld-QgNaBlvyHb2-gKkYiCuaiZYTZnIIxKtVX09_ANAVxy5ytatJ2j_GemJFDnGV0hUz_htNraTKmMSR6f7I0rs5vZ0IsWypFTTypL5oJaNyBAWw/s1600/5W9.jpg" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nobody else is fitting in here.</td></tr>
</tbody></table>
<br />
Aidan had no problem getting right down to business, by which I mean getting his flashcards sorted and his DVD player going.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXXFB-7W0ryZ_VUD8woJ5JM9yOWs6dvmTmBox5lvzuKk-qwQkPokax93vwyELizfTNdByZg-tMVbnQP_fjUDZ7_kGpG2sIsxAZVkEVysWBiPqGYN4RI5DoKGoHSCWhzMQDnODeig28wp4/s1600/3rd1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXXFB-7W0ryZ_VUD8woJ5JM9yOWs6dvmTmBox5lvzuKk-qwQkPokax93vwyELizfTNdByZg-tMVbnQP_fjUDZ7_kGpG2sIsxAZVkEVysWBiPqGYN4RI5DoKGoHSCWhzMQDnODeig28wp4/s1600/3rd1.jpg" height="320" width="239" /></a></div>
He quickly decided that <i>one</i> measly show was insufficient. Any kid worth his salt needs at least <i>two </i>forms of electronic entertainment at all times.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVxjg1irfqdnc52s4u7LlV12_HOz_F7fCjvw4EDvo24ktPMVVbMRytC6jmjVdR15srjVDxD_U7Sy7WYTtgb7SCV1gwjEnd3aR03pb4AL_LSG0HXmersfHp3fl_XCdt8U9VjxXdyOngvso/s1600/3rd2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVxjg1irfqdnc52s4u7LlV12_HOz_F7fCjvw4EDvo24ktPMVVbMRytC6jmjVdR15srjVDxD_U7Sy7WYTtgb7SCV1gwjEnd3aR03pb4AL_LSG0HXmersfHp3fl_XCdt8U9VjxXdyOngvso/s1600/3rd2.jpg" height="320" width="239" /></a></div>
<br />
I had to give the backstory to the docs here - which I realize now that I never gave on this blog - so here's the very short version. A couple of weeks ago, Aidan had a routine scope at CHOP Exton. The prep included being on Pedialyte for the entire day prior. He seemed fine at the time, but for some reason, we didn't check his blood sugar that day. I really wish we had, in retrospect.<br />
<br />
The next morning, we woke up early to go down to Exton for the scope. He seemed lethargic, but it was also 5am, and who isn't lethargic at 5am? I didn't think much of it. He fell asleep in the car on the way there, and I had trouble waking him when we got there. I checked his blood sugar, and it was critically low - 34. I rechecked twice, and got 31 and 36. He was rushed back to the PACU and started up on IV dextrose, which brought his blood sugar up to 146. He was taken off the dextrose for his scope, but within 15 minutes, his blood sugar dropped to 111. In another 30 minutes, it dropped to 80. He was given formula boluses, but it fell further to 71. They put him back on IV dextrose, which got him up to 186, and then he was released to go home. 30 minutes later, he was at 118. 30 more minutes later, he was at 67.<br />
<br />
Since then, he's been on 24/7 feeds with no breaks at all, because he's not holding his blood sugar up on his own. The thought was to admit him today to figure all of this out with a plan in place for what tests would be done to help get to the bottom of things.<br />
<br />
I was thinking that it was the smoothest admission we'd ever had, which was obviously the stupidest thing one can <i>ever</i> think in a hospital setting, because you're <b>begging</b> for trouble. Literally as I was thinking these hazardous thoughts, our nurse brought news that despite the multiple conversations I had with the admissions and endocrine people prior to our arrival, they were unable to find any formula for Aidan. And we only had this much left of the feed he came in on:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeVTPyxljK_5tb0pJTdZfeCp1osa8_lAlwwo2NeKYGUbVZYVituy9ugcP_1My0FTaL818IUZUm34NhJNi-Skzh2OqycTe49M7Ya5xSFnBq1p7D0M3wQmLu0TndWVOnhXPiPIYOcZg2Q40/s1600/3rd3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeVTPyxljK_5tb0pJTdZfeCp1osa8_lAlwwo2NeKYGUbVZYVituy9ugcP_1My0FTaL818IUZUm34NhJNi-Skzh2OqycTe49M7Ya5xSFnBq1p7D0M3wQmLu0TndWVOnhXPiPIYOcZg2Q40/s1600/3rd3.jpg" height="320" width="239" /></a></div>
<br />
Long story short, I had someone drive some in from home, and like last time, by the time it got here, CHOP was able to rustle some up. I really wish they could get their act together. I know it's not a common formula, but it's prescribed by our CHOP doctor and he's gotten it inpatient before - <b>I know it's here</b>. Why do we have to go through this every time? Is it too much to ask where they found it, so that next time this happens, I can tell them where to look? Sigh.<br />
<br />
Anyway, the plan for the rest of the evening is to keep him on his continuous feeds and check his blood sugar every 3 hours to establish his baseline (90something at 6pm, 80something at 9pm). Tomorrow, when the team rounds, we'll discuss the plan for his fast. That's when the real fun starts. I'll keep you posted!<br />
<br />
<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-25444988369812878902014-08-13T07:00:00.000-04:002014-08-13T07:00:01.240-04:00A foray into blood glucometers<div dir="ltr" style="text-align: left;" trbidi="on">
After a whirlwind visit to Endocrinology, we found ourselves in possession of a slew of diabetic testing supplies, with instructions to test Aidan's sugars for the next few days as he comes off feeds to monitor for uncontrolled low blood sugar episodes. I'm writing this post for me - because today, on day 1, I remember everything I've been told. I may need to read this later.<br />
<br />
<u><i><b>Supplies </b></i></u>- A grocery bag full of vampiric goodies.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX-MJvgFXKH8bL9oCh0RzqNPScDxcBOAvlL6XCFvQysCMkB4wfs_qD25QbXZ36Pc7-ArGttiSU4F7x4YrDuj-2Cx9cXZVvEGUV9DhGF7fKrgT6SVMWaJYnY2v3kypNRRpO3w74mW-oaoA/s1600/bag.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX-MJvgFXKH8bL9oCh0RzqNPScDxcBOAvlL6XCFvQysCMkB4wfs_qD25QbXZ36Pc7-ArGttiSU4F7x4YrDuj-2Cx9cXZVvEGUV9DhGF7fKrgT6SVMWaJYnY2v3kypNRRpO3w74mW-oaoA/s1600/bag.jpg" height="320" width="239" /></a></div>
<br />
<br />
We were given a Contour Next EZ Meter. And no training whatsoever. My wonderful colleague, Bob, took the time to show me what to do, and I felt at least seven hundred times better once he did. There is also a really helpful instructional video on Bayer's website. A note - the meters should be operated in temperatures between 41 and 113 degrees (you'll get error code E1 if you're out of temperature range).<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYcUTuUahVD0bn9RKN8viqfFWl312ZvKFLjrWcfDw6koqSVuFKpJDOff2D0i2NczYHkOwElBNu-btRUWbVKAyA33sZpweO5FLZ6KjuZ2w8rzzZ2hRRuGRMg6faleVjEUmmAwd9ptdT0LM/s1600/meter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYcUTuUahVD0bn9RKN8viqfFWl312ZvKFLjrWcfDw6koqSVuFKpJDOff2D0i2NczYHkOwElBNu-btRUWbVKAyA33sZpweO5FLZ6KjuZ2w8rzzZ2hRRuGRMg6faleVjEUmmAwd9ptdT0LM/s1600/meter.jpg" height="320" width="239" /></a></div>
<br />
<br />
I also received a bottle of control solution - which contains a premeasured amount of glucose. It's useful for practicing with the meter, on the off chance you don't want to stick yourself a few dozen times. It's also used for testing the meter to ensure that the meter, test strips, and your technique are all working correctly. It comes with instructions, but basically, you put a drop of control solution on a nonabsorbent surface (they recommend wax paper), and touch and hold the tip of a test strip to the control solution until the meter beeps. You compare your result to the normal control range on the test strip bottle (and different bottles may vary - mine do). If the results are questionable, the meter user guide should offer some suggestions regarding next steps.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivSt0nhvpWvzq8PUV9kGwKAJK0VIjAALkmjEdZsldcFkSqawMjarolC3g55wmQbxL7auNCwe-maraJxy0OZOpCYYdQqrcDs262vKjFT9rlZXW2vOS1ZmJZvuZ63Bhybj7F_10TCz4BPts/s1600/control.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivSt0nhvpWvzq8PUV9kGwKAJK0VIjAALkmjEdZsldcFkSqawMjarolC3g55wmQbxL7auNCwe-maraJxy0OZOpCYYdQqrcDs262vKjFT9rlZXW2vOS1ZmJZvuZ63Bhybj7F_10TCz4BPts/s1600/control.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I am nearly positive this is the wrong stuff.</td></tr>
</tbody></table>
<br />
Alcohol Prep pads - for cleaning skin before testing. Self-explanatory.<br />
<br />
Contour Next Test Strips - Obviously, for use with the meter. They test blood glucose levels between 20 and 600 mg/dL - numbers I expect NEVER to see. This should go without saying, but they're single use only. <b>Never reuse a test strip.</b> It's also important to keep the bottle closed tightly to protect the strips from humidity and contamination. A nice feature that I think most test strips have now is the "sipping" technology - you just have to put the test strip up next to the blood and it draws it up into the meter - you don't actually have to soak the whole strip in blood. Older meters/strips didn't work this way, and needed more blood to test.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz19aouOL0yrfYHfi_X8uXxvQNyg6DhZKpQ0XNNfgT50aZSHmFe2qwIPVyPpSnnAi5rTCp9vYNXH8SjU_Y90S2hGQ__xCm8PcphvM3qvGiCdVfU9RM6gwOO1_LxPurMWQAzTJI3LH2oMc/s1600/ready.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz19aouOL0yrfYHfi_X8uXxvQNyg6DhZKpQ0XNNfgT50aZSHmFe2qwIPVyPpSnnAi5rTCp9vYNXH8SjU_Y90S2hGQ__xCm8PcphvM3qvGiCdVfU9RM6gwOO1_LxPurMWQAzTJI3LH2oMc/s1600/ready.jpg" height="320" width="239" /></a></div>
<br />
<br />
Microlet 2 Lancing device & lancets - This is what you prick the skin with to obtain the blood for sampling. The Microlet is easy to use - you just pull off the cap, insert a lancet, twist off the top of the lancet, replace the cap of the Microlet, and choose your endcap setting (tiny droplet for shallow puncture, big droplet for deep puncture) based on the patient and test area (fingertip vs. forearm, for example). You press the endcap firmly against the test area and press the blue button, and it's done. Like the test strips, you should <b>never reuse a lancet.</b> Once used, they're no longer sterile and should be replaced. To remove a lancet, you open the endcap, press the needle into the lancet cap you removed earlier, eject using the blue button and blue reset slider, and dispose as medical waste.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTeoDnGLCLagTOdocYfv6fsfXSZX8M6s7cMJrr-tLA4IHQcKbTn6a-fHNSG_IOIGPnun23MFnBNmdCHv4kJt7FVeu2QnUFbRaXW43WFdThyphenhyphennlGdnHEJiWnGSR6Ux5prLKp9Z1tdCiHxbg/s1600/lancer.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTeoDnGLCLagTOdocYfv6fsfXSZX8M6s7cMJrr-tLA4IHQcKbTn6a-fHNSG_IOIGPnun23MFnBNmdCHv4kJt7FVeu2QnUFbRaXW43WFdThyphenhyphennlGdnHEJiWnGSR6Ux5prLKp9Z1tdCiHxbg/s1600/lancer.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not scary.</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO75fyFXYemxkOFjIripeAlEyNy0AngHpqh1DqBslEmiCABe1TmGONDNK2evhAC1eBVDVM6iC6sZK7ljOB8J6qkttQ_BXdvJ6wO5nh4_nsnwfXVabxs64Efror6dg1i8UMG1xNS0CEawo/s1600/lancet.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO75fyFXYemxkOFjIripeAlEyNy0AngHpqh1DqBslEmiCABe1TmGONDNK2evhAC1eBVDVM6iC6sZK7ljOB8J6qkttQ_BXdvJ6wO5nh4_nsnwfXVabxs64Efror6dg1i8UMG1xNS0CEawo/s1600/lancet.jpg" height="320" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even less scary. Itsy bitsy needle.</td></tr>
</tbody></table>
<br />
<br />
<br />
Basic Use - We do not use any advanced features of this meter. Aidan is not diabetic - he is experiencing hypoglycemic episodes that we need to monitor more closely. The advanced features (reminders, meal markers, etc) look really helpful for diabetic patients, but that's not us.<br />
<br />
- Load a test strip into the meter, gray square end facing up. This turns the meter on. You'll see a blinking picture of a test strip with a blood drop - this means it's ready to test. If you've loaded it incorrectly, you'll get error code E4. If you use the wrong test strip, you'll get error code E7.<br />
- Draw a blood sample using Microlet and touch the tip of the test strip to the blood drop. Hold it in place until the meter beeps.<br />
- If more blood is needed, the meter may beep twice and show a picture of an underfilled strip. You'll have 20 seconds to add more blood to the same strip - if you don't, you'll get an E2 error code and you'll have to start over.<br />
- Once the meter has what it needs, it will evaluate the sample for 5 seconds and display your reading and store it to memory.<br />
- Record your reading and remove the strip to turn off your meter. And you're done!<br />
<br />
<br />
My own testing efforts -<br />
<br />
- Attempt 1 with control solution resulted in error code E3 - either the meter is sensing a used test strip, or the wrong control solution was used. Ummm... Everything is brand new, and this is definitely the control solution they gave us. Wha??<br />
- Attempt 2 - E3.<br />
- Attempt 3 - After gently rolling the bottle around to make sure the control solution is all mixed up - still E3. ARGH.<br />
- Attempt 4 - After being ultra careful that no part of my fingers touched any part of the test strip sipping area - E3.<br />
- Attempt 5 - The control solution is clearly broken. I tried with my own blood. I had chicken for dinner about 4 hours ago, and my blood sugar is currently 114. Humm. We'll call that "high normal" and assume my technique is okay. And also, the control solution is broken.<br />
<br />
Important points - these are what's important for us. There are a million and one things that are also important for families managing diabetes. Thankfully, we're not walking that road.<br />
<br />
Normal non-diabetic values are between 70-110 when fasting.If Aidan's fasting blood sugar measures below 70, we are to report that to his doctor within the week so we can change his feeding strategy. If Aidan's blood sugar measures below 50, we are to seek immediate medical attention.<br />
<br />
Some symptoms of low blood sugar (hypoglycemia) are shakiness, sweating, fast heartbeat, blurry vision, confusion, lethargy, irritability, dizziness, and seizure. Some symptoms of high blood sugar (hyperglycemia) are frequent urination, excessive thirst, blurry vision, fatigue, and hunger. Some symptoms of ketoacidosis - a serious and dangerous medical emergency - are shortness of breath, nausea/vomiting, and very dry mouth. All of these symptoms are a good prompt to check blood sugar for a patient with a known issue - and someone with a reading of <i>less than 50</i> or <i>more than 250</i> should call their doctor right away. Again - not anything we ever expect to see with Aidan, but good to know and I figured there should be something informative in here somewhere.<br />
<br />
After much reading and self-testing and worrying, I mustered up the courage to test Aidan for the first time. I let him pick which finger he'd like to test, and he was awesome about it. Didn't cry at all. He just asked - are you done yet? The hardest part was getting him to hold still while I touched the test strip to the blood drop. His reading was 74, while still on a feed, and it officially occurs to me that I <i>never asked</i> what a normal <i>nonfasting</i> blood sugar should be for him.Whoops.<br />
<br />
More to come as we test and learn more. <br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-10232590254428620702014-08-11T07:28:00.000-04:002014-08-11T07:28:00.529-04:00I don't love on CHOP enough<div dir="ltr" style="text-align: left;" trbidi="on">
As I finished writing the latest CHOP saga, it occurred to me that I really only speak out when truly unacceptable things are going on in our lives. We're marginalized, we're ignored, someone fails to understand us, someone forgets to get back to us, we're arguing about procedures and preps, we're arguing about medications and allergies, we're fighting for formula. It's enough to scare everyone we know away from CHOP, which is just about the saddest thing ever.<br />
<br />
CHOP is an amazing place. It's a wonderland where the sickest and most complicated children can go to heal and grow. It's a place where ER nurses remember my baby when he comes in. Where I'm allowed to contort into unimaginable positions to fit into a hospital crib all night long with my frightened child (not allowed at DuPont!). Where child life specialists never stop trying to include him, even though he quite clearly blurts out "no! get out of here!" every time they try. It's a place where you can get more than halfway decent food (most of the time), and the sushi guy makes me fresh cucumber-only rolls. If Aidan is too sick to be at home, there's nowhere on Earth I'd rather take him.<br />
<br />
Our last hospitalization reminded me of what a special place this is, and how special the people are who work here. As we were heading home, I posted a picture of Aidan walking through the CHOP Atrium on Facebook. When our nutritionist saw the picture, she immediately knew where we were, and responded with two words. "Call Me."<br />
<br />
She loves us. She cares. And she's not the only one.<br />
<br />
I hope that the next time I'm unspeakably angry or completely devastated, I take a moment to come back and re-read this. Make no mistake. This place - these people - <b>save lives. </b>Every day, in a thousand ways.<br />
<br />
<span style="font-size: x-large;">Thank You. </span><br />
<span style="font-size: x-large;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzOFQv6Ch3KukdLOjvTMfAUHrfEf-YTRUFwKbwgXlpwO6p9SsLaFj98bK6iW3s8WWdy_gf0C-zxOWUmGEP4Q1T8d9683zQnaXo7TT1chtj2qlLe-jccY7ScRbgc4BL9E3aQOjxXRKRGMQ/s1600/chop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzOFQv6Ch3KukdLOjvTMfAUHrfEf-YTRUFwKbwgXlpwO6p9SsLaFj98bK6iW3s8WWdy_gf0C-zxOWUmGEP4Q1T8d9683zQnaXo7TT1chtj2qlLe-jccY7ScRbgc4BL9E3aQOjxXRKRGMQ/s1600/chop.jpg" height="265" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span style="font-size: x-large;"><br /></span>
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-39450278115860304102014-08-04T15:17:00.000-04:002014-08-04T15:17:00.163-04:00CHOP in June - Part 2<div dir="ltr" style="text-align: left;" trbidi="on">
EEEEEK! It's AUGUST and I didn't finish telling you about our trip to CHOP in June. Life really got away from us.<br />
<br />
When you left us, Aidan had been painfully vomiting green bile. After a weekend of this, we were sent to the ER for some tests, and ultimately allowed to go home. A week passed without improvement and we followed up with GI, who sent us directly back to the ER, where Aidan was admitted on a Friday night. <br />
<br />
Saturday
on 5 South was exceptionally uneventful - no feeds for Aidan and no vomiting.
Scattered episodes of stomach pain, but nothing severe. Around
lunchtime, we started Pedialyte at 35ml/h (half of his normal rate) and
it was tolerated well. Around dinnertime, we increased to 70ml/h and
after some initial discomfort, he settled down and tolerated that well
too. I don't know - maybe he just needed some gut rest?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VbpXvZDh_3frpU30b-33pFv7bYOzfM4zFWkIxBQkGMPmDx8AHyg3KVPZe0dJbXqlLw8oSJpoRr9-7zL77ndqUOiKXsPtRQGXOQk1O1jZ7me-__8DTxv98NMoC2zAi2ZkBdDJF-um9oM/s1600/hosp4.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6VbpXvZDh_3frpU30b-33pFv7bYOzfM4zFWkIxBQkGMPmDx8AHyg3KVPZe0dJbXqlLw8oSJpoRr9-7zL77ndqUOiKXsPtRQGXOQk1O1jZ7me-__8DTxv98NMoC2zAi2ZkBdDJF-um9oM/s1600/hosp4.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A gut at rest :)</td></tr>
</tbody></table>
<br />
On Sunday, the doctors rounded
around 10am and came up with a plan. We'd be starting feeds slowly and
increasing every four hours as tolerated. If he had an episode, we'd
call radiology for emergency imaging. If not, we'd do imaging on Monday
morning. I figured we'd have a quiet day. But it wasn't without bumps
in the road.<br />
<br />
For instance - did you know that if your
child is on PurAmino, you should come prepared for no one - ever - to
have heard of it? For the formula room to insist they don't have it?
Nor do they know how to mix it. Tom had to make an emergency trip
downtown with a supply of formula to save the day. When it arrived, it
took hours - <i>literally, hours -</i> for the formula room to figure out what to do with it. The kicker? They eventually realized that they <i><b>did</b></i>
have it (still didn't know how to mix it, so thankfully I recently
blogged about how we mixed it - otherwise there's no way I'd have
remembered). Long story short - the 10am decision to start feeds
actually took effect at 3:30 due to all of that hoopla. And advancing
feeds every 4 hours? HA! We got up to 45ml/h before having to go NPO.<br />
<br />
Sunday also brought some stoma pain - It's looking a little bit infected, which is a shame since it's
normally such a beautiful stoma. They ordered up some mupirocin (easy
enough) and some tylenol, which caused a(nother) pharmacy debacle. See, we
don't use their tylenol, we use ours. They don't have dye-free tylenol
because <i><b>dye allergies aren't real</b></i>, evidently.<b><i></i></b> So we have to bring our own and
send it to their pharmacy, where they verify it (whatever that entails)
and eventually it arrives back in our room to be administered.
Unfortunately, the "eventually" is sometimes a while. Like an hour or
two. Which is really unfortunate for a kid who's in pain. I later
learned that the order was written incorrectly, which confused the
pharmacy. Then the pharmacy wrote a confusing note back to the doctor,
who was (you guessed it) confused. Then our nurse inexplicably left the
floor without her phone, and the nurse filling in knew nothing about
it. Sigh. We did work it out eventually. <br />
<br />
So as of Sunday evening, the plan to advance
feeds was pretty well compromised, because he would have to be NPO
(nothing by mouth. Is that common knowledge? I don't know if
pre-all-of-this-me knew those particular letters, but we know them well
now) at midnight in preparation for tomorrow's Upper GI. We'd started
at 35ml/h at 3:30pm, and around 8:30 we moved up to 45ml/h, but no
further advancement because of the looming Upper GI.<br />
<br />
An
Upper GI is a special kind of X-Ray that helps doctors see the
gastrointestinal tract. Preparation includes drinking barium contrast
(so some people call this a "barium swallow study") and then taking <i>lots </i>of pictures - usually about 2 hours' worth, and sometimes even more!<br />
<br />
On Monday, we woke up just in time for the Upper GI. Aidan took one itsy bitsy sip of Barium and then couldn't be convinced to take more. Luckily, we aren't too concerned about the "upper" part, and really just needed to see the barium move through the stomach and small and large intestines.<br />
<br />
The first thing we did with the Upper GI was take a "before" picture - his tummy without any Barium.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioDxrOz2wEfjokFtfOJxbrHx5C7ULMh_JAd3l_k156U7lyB3mLnGEB3DNu8OAW5gSf4WrRiYmzCHfszrppORnZTb97tnGs1gr-A-fyBCuy_Ec14XX9IYHeiMLMmJ6WgtjeiPrNhU6YZaU/s1600/ugi1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioDxrOz2wEfjokFtfOJxbrHx5C7ULMh_JAd3l_k156U7lyB3mLnGEB3DNu8OAW5gSf4WrRiYmzCHfszrppORnZTb97tnGs1gr-A-fyBCuy_Ec14XX9IYHeiMLMmJ6WgtjeiPrNhU6YZaU/s1600/ugi1.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I spy a tummy!</td></tr>
</tbody></table>
Then, Aidan took his tiny sip of Barium, and they took X-Rays. And then Barium was injected into his G-Tube, and more X-Rays. Then we got to cheat a bit, since he has a J-Tube too. We got to inject Barium into the J-port, and the tech said that he thought we'd get out of there <i>early! </i>After that, we had to wait in a little room for 20 minutes while the Barium moved through his intestines, and then back to the X-Ray machine for more pictures. I'll speed this story up and tell you that we did <i><b>not</b></i> get out of there early, even with the cheating. The tech was thinking we might only need one or two cycles of waiting/pictures - so we'd be done in less than 90 minutes total. Actually, it took over four hours.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVUyDtlZVLnEdJCYAUt_R8XFkWPB_-mhsqzXMpj3kVF1rOEo4f4dJcLNK7Ynoavty0vjNstaVAhyTf8bjlU2yh0R06p_lrkjICVzWXlflFCqQOWoBsFGCu86d3T0cDCZFkDoJODrKofjI/s1600/ugi3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVUyDtlZVLnEdJCYAUt_R8XFkWPB_-mhsqzXMpj3kVF1rOEo4f4dJcLNK7Ynoavty0vjNstaVAhyTf8bjlU2yh0R06p_lrkjICVzWXlflFCqQOWoBsFGCu86d3T0cDCZFkDoJODrKofjI/s1600/ugi3.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ho hum. Waiting is the worst!</td></tr>
</tbody></table>
Aidan's motility is not the best, even on erythromycin (his motility med), so the Barium really just wasn't moving through like we hoped it would. It took <i>forever. </i>But eventually, we did get a belly full of Barium.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmTLpZFwwIQabgEaifbaJqxKaOqxfmHfgf06RNtmpNIZbD-qEz66IgB81A7aYBeMZc9szs3g2_WpQ9TV4I8QIIWwn7hQa4ZhbNub_lPBakyyYHdm1kg3excDblwEUS0KvC3QKyzUt57pI/s1600/ugi2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmTLpZFwwIQabgEaifbaJqxKaOqxfmHfgf06RNtmpNIZbD-qEz66IgB81A7aYBeMZc9szs3g2_WpQ9TV4I8QIIWwn7hQa4ZhbNub_lPBakyyYHdm1kg3excDblwEUS0KvC3QKyzUt57pI/s1600/ugi2.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We'll file this away under "things only a mother would love"</td></tr>
</tbody></table>
When we <i>finally</i> got back up to our room, Aidan took a nap and I got some work done while waiting for the doctor to come talk about the results and our plan for him. Turns out it would be a preposterously long wait, since GI <i><b>never actually came back</b></i> and eventually left for the day. Thanks, jerks.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8bO6mielho7s477KZ7GZyBbeyrDnaCgxF8H7pKdK5yiymn-FvrN9RpPz0_WP7Hb1Hy1awEV7w3zRk-b3h6RARhySg1qC9bLLCbeXzXqN1hufCQJrXPw_oa-LzoAqFLDf1xUt7NU7lHDk/s1600/hosp6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8bO6mielho7s477KZ7GZyBbeyrDnaCgxF8H7pKdK5yiymn-FvrN9RpPz0_WP7Hb1Hy1awEV7w3zRk-b3h6RARhySg1qC9bLLCbeXzXqN1hufCQJrXPw_oa-LzoAqFLDf1xUt7NU7lHDk/s1600/hosp6.jpg" height="480" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dainty</td></tr>
</tbody></table>
<br />
When GI came back the next day, we did learn that Aidan's Upper GI was not normal. We already know that he has
delayed gastric emptying - when food (or formula, whatever) is
introduced into his stomach, it doesn't move through at the normal
rate. This is why it took so long for the Barium to move through. The test also showed some not-too-specific inflammation of the colon - which could be from normal illness, or could be from an EGE flare. Not really any more information than we previously had.<br />
<br />
Ultimately, we decided to bring Aidan home, with orders to return immediately if the bilious vomiting began again.<br />
<br />
It was more or less the same as ever. Aidan in crisis, needs gut rest and IV fluids for several days, and a slow reintroduction of feeds. I wish I knew why this keeps happening to him :-(<br />
<br />
<i><b>Side Note...</b></i><br />
<br />
The whole time we were inpatient, Aidan was on contact precautions due to a suspected c-diff infection<i><b>.</b> </i> The hospital was unable to confirm or rule out the infection because - true to form - Aidan's digestive system shut down and no test sample could be obtained. This particular monster would come back to bite us later on.<i><b> </b></i><br />
<br />
<i><b>Final Thoughts...</b></i><br />
<br />
I understand that CHOP is ranked #1 by US News & World Report, but clearly, they've never actually stayed here. Or they don't have children. Or they don't need fancy luxuries like a pillow to sleep on. I do wonder how different our experience would be with a planned admission for a surgery. Emergency Room visits that end in admissions are just always so nebulous and vague. Who knows what we're doing or when we're going home? My experience here would be <i>at least </i>80% better if doctors could be bothered to clearly communicate. <br />
<br />
<br />
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0tag:blogger.com,1999:blog-4289467626085219850.post-570278928447603512014-07-14T07:00:00.000-04:002014-07-14T07:00:07.222-04:00Feeding Tube Awareness Foundation - A Parent's Introduction to Tube Feeding<div dir="ltr" style="text-align: left;" trbidi="on">
I think everyone knows by now how much I love the Feeding Tube Awareness Foundation. They were a really helpful source of information for us when Aidan got his tube, and I still go back there when I'm troubleshooting a problem or feeling a little discouraged.<br />
<br />
Recently, they released A Parent's Introduction to Tube Feeding - which you can download <a href="http://www.feedingtubeawareness.com/A_Parent_s_Introduction_to_Tube_Feeding__Apr_2014.pdf" target="_blank">HERE </a>- or request a hard copy of (free for new Tubie Parents, Hospitals, and Medical Professionals.<br />
<br />
The early days with a tubie can be very dark - FTA is a bright shining light. If you know someone who needs that light, <i>please</i> send them in this direction<br />
<br />
<a href="https://www.blogger.com/goog_1384910941"><br /></a>
<a href="http://www.feedingtubeawareness.com/">http://www.feedingtubeawareness.com/</a><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiROfZcrJ_cyI_0t21b7TXn2KwVKM3VSL7acji55f4ZpbJR0l7nlIOysPWyqPiIRR3MryG4dXVmNqLDVPuArIhirdKyPQiYJeq3lu-bv9S0N7FZ_8XmnmjyzcTfHMq09tVg9mc6bnhrPcs/s1600/Parent_Guide.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiROfZcrJ_cyI_0t21b7TXn2KwVKM3VSL7acji55f4ZpbJR0l7nlIOysPWyqPiIRR3MryG4dXVmNqLDVPuArIhirdKyPQiYJeq3lu-bv9S0N7FZ_8XmnmjyzcTfHMq09tVg9mc6bnhrPcs/s1600/Parent_Guide.jpg" height="320" width="247" /></a></div>
<br /></div>
Carolinehttp://www.blogger.com/profile/01012306959183181787noreply@blogger.com0