Sunday, September 13, 2015

September already? Playdates, Sesame Place, and Support

What a week.  September already!

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 know 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?"

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.

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.

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 amazing.  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.

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.

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 some underlying cause, 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 Mito.

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 good, to live a happy, pain free life, and to feel normal - whatever normal may turn out to be.

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 ( - 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 Aidan) sports a button feeding tube, a backpack, and a medic-alert bracelet - just like him!  Also, little Aidan loves school buses - just like a little guy I happen to know and love.

Seriously, how adorable?

My little ham

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."

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. 

Sad little sicky...

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!

Friday, September 4, 2015

Updates - Complex Care, Rare Care, and Besties

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.

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.

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.

All of this is so much more direction than we had even two weeks ago.

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.

This has to be a strangulation hazard - right?
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 be a little boy.  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.

Best Friends go with it when you rename their clubhouse "The Charmed House"

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 :)

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.