Halloween 2012 - Trial Run...

After last year's costume debacle, I thought it would be nice to get a jump on things.  My first plan of action?  Try on last year's huge costumes!

Surprisingly (or not...), they both fit!  So it's looking like it will either be an Otter Halloween or a Monkey Halloween.  And I think I'll let him make it a game time decision :)

Which one do YOU like better?!

Halloween 2011: Does that some in size "Uber Tiny"?

Over a year ago, I started to excitedly plan Aidan's first Halloween.  I bought the cutest Monkey costume ever!  I went for size 12m, because he'd be getting close by Halloween.  Annnnnd, then I tried it on him.

Um, crap.  Forgot about that pesky Failure to Thrive thing.  There's no way he was going to grow into this within a few weeks.

Back to the drawing board.  Found a super cute Otter costume online, in size 6-12 months.  It HAD to fit, right?

Double crap.  I think this one is even bigger!  Even Aidan looks concerned.

We did ultimately (after lots of panicked searching) find a costume that fit (kind of.  Ignore the pant legs please.) in size 0-6 mos.  Aidan was the cutest dragon EVER.

He had an awesome time with his buddies too :)

Superman Ryan, Obi-Wan Teddy, Dragon Aidan, and Mickey Chase!

Adding Flying Monkey Phinn to the group shot

So I guess it's time to start thinking about Halloween 2012!

Before this all happened - before I brought home my perfectly imperfect little boy, and before I began finding kindred spirits on the Internet - the term "tubie" meant nothing to me.  And chances are, if you don't personally know one, it doesn't mean much to you either.  It's an ongoing mission of mine to change that...

Enter Feeding Tube Awareness.  The site is immeasurably helpful and immensely comforting to boot. It's packed full of information about feeding tubes - different types of tubes, facts about tube feeding, information about making the decision to tube feed, stories of brave tubies, and resources for friends and family members of tubies.  It also offers, via facebook, a way to reach out to others who live this as their "normal."  But none of these are the biggest, most important thing that FTA does. FTA helps raise awareness of feeding tubes and the people who live with them.

I want to do so much for this cause.  We live it every day.  For now, we are doing what we can to spread the word and, hopefully, spread the acceptance.  We love our tubie, and we want everyone to know it.  We have NOTHING to hide and we want the world to know what a Super Tubie looks like. He's brave, he's beautiful, and he's proud to be just the way he is.

If you want to learn more or support the cause by proclaiming that YOU <3 a Tubie, please visit FTA online at: http://www.feedingtubeawareness.org/ or find them on facebook at: http://www.facebook.com/FeedingTubeAwareness

And don't forget to bling out your car with I <3 A Tubie Car Magnets from the FTA store!  They also have shirts, hoodies, onesies, and even temporary tattoos!  I've branded both of our cars, Auntie Megan's car, grandma's car, great-grandma's car, and even great-grandpa's golf cart!

Mommy's Car

Daddy's Car

Aidan Rocks Dentistry...

I've been dreading this.  Apparently, good parenting requires regular visits to the Dentist.  I hate the Dentist - but it's entirely unfair to put that on him, so off we went for the exciting first time...


Our first discovery?  This place has Pac Man.  We might never leave.

Our next discovery?  Aidan can reach the buttons.  Seriously, not leaving.

We practiced opening wide and saying "AHHHHHH!" from the safety of the Pac Man machine.  This feat would not be repeated in the Dentist's actual exam room.

The exam itself was easy - just a peek in his mouth, a count of the teeth, and a clean bill of oral health.  No cavities, no plaque, no damage of any kind yet from bottles or binkies.  A reminder never to send him to bed with a bottle (we know) and to try to wean him off the binky by age 3.

And we're done!  Back in six months.  But boy are we going to miss Pac Man...

 

Medical Me - Baby Aidan visits the Allergist

It was a big day for Baby Aidan.  First, he meets his new family (Daddy? Brother? Overlord?  Who knows...).  Then, it was time for a visit from the feeding therapist, and THEN, a visit to CHOP.


Feeding was fun.  Aidan wanted Baby to have his own bottle, and to sit at the table with us.  Baby Aidan, ever the cooperative one, was happy to oblige.

Breakfast Time!

Once Aidan started getting restless, the Feeding Treats came out.  I couldn't believe my eyes when I saw Aidan sharing his treats with Baby.

Here you go, baby.  Good eating!

And another one for Big Aidan

If sharing whistles was surprising, what happened next was just about heart-attack-worthy.  Aidan is on a sticker rewards system for eating, and stickers are gold around here.  We don't squander them like fools.  But still, after Baby Aidan "took a sip" from his big boy cup, Big Aidan gave him a sticker!

Good boy!

 And then another one!

What a good drinker!

I couldn't believe it.  I almost cried.  Not only does Aidan obviously understand the sticker system, but he knows (in theory) how to be nice!  And share! Holy crap!


After feeding and a short nap (together), I packed up my Aidans and headed down to CHOP.  The Aidans had a grand old time in the Allergy waiting room.  Big Aidan even shared his Legos.
 

And then it was doctor time.  Which, obviously, meant that it was time to show off Baby Aidan's tubie!

Right there!

YAAAAAAAAY!

Thank you, thank you, thank you - from the bottom of our hearts - to Chelsea at Cerebral Palsy Mentor.  We look forward to many more happy visits with Baby in tow.

Medical Me - Baby Aidan meets Big Boy Aidan

"Baby" has become such an integral part of our daily lives, I almost forgot to tell you all about the day he and Big Boy Aidan met.

As I mentioned before when I introduced him, Baby Aidan made his debut on Patch Day.  I wasn't sure how it was going to go, since Aidan's never had a doll before and so hasn't had the opportunity to show any love for them.  As it happened, I had nothing to fear.  It was adoration at first sight!

I love you, Baby Aidan

What do you mean "give him back"?

Dream on, Mommy.  This is MY baby!

Every day since that day, Aidan has loved and cuddled his precious baby.  Sometimes, in the car, he gets the idea that I might take his baby away.  This causes a 10 minutes tirade from a cranky toddler that sounds something like this:

Oh no, mama.  MY BABY.  NO! MY BABY! MYYYYYYY BABY!

Okay Aidan, your baby.  I won't take your baby.

NOOOOOOOOOO!  MYYYYYY BABY!

It's actually pretty cute (the first dozen or so times).

Aidan Rocks Soccer

You know what?  I don't think I talk enough about all of the things my little man CAN do and does SO WELL!

One of Aidan's biggest strengths is that he's an active kid.  Give him space to run or things to climb, and he's a happy man.  Mommy-and-Me Music Class just isn't quite his tempo, no matter how cute a toddler looks with a tambourine (very cute).

With this in mind, we decided to sign him up for soccer.  Yup, soccer.  And yes, he is indeed still 1.  I knew it would be... interesting.  And exhausting.  Stressful?  Hilarious!  Right up his alley :)


We begin with investigation.

Am I okay with this great big field?

Who are all these kids?  Are you sure you'll remember which one is me???

What the heck is this thing?!

Then, we notice why this place is so great.

OHMYGOD BALLS!!!!!

 And now it's time to start working on the basics.

Fetching...

Looking super cute...

Remembering which ball is mine (are you SURE it's not "All of them"?)

Chasing my ball... Get back here!

Pretending I kicked that thing into there so Mommy and Daddy get excited...

Being super handsy with the ball and pretending I don't know what "use your feet" means...

A room full of toddlers in barely-controlled chaos, chasing balls and balloons around a field for 40 minutes?  This boy is in heaven.

Every day with him is a reminder that there is nothing he can't do.  Nothing that can slow him down.  And no reason to feel sorry for him.  Keep on kickin', little man!

Guest Post Day!

I guest posted today over at Growing Up Geeky - check it out and show me some (slightly neurotic mama) love!

Click here for my Guest Post @ Growing Up Geeky!!

Fun Finds Friday - Medpax

A while back, I stumbled across something really cool online.  It's from a company called Medpax, and it's intended to store live-saving emergency medications (like epi-pens and inhalers!) along with very important medical information (diagnoses, treatment plans, and emergency contacts).

Medpax makes boxes specifically for Allergies, Asthma, or a combination of the two.  I love that they've thought to include a list of symptoms that caregivers should look out for, along with the treatment plan for both mild and severe symptoms.

I definitely want to get one of these before Aidan begins school - Go check it out!!!

Diagnosis: EGID

Like any child, Aidan underwent lots of tests and doctor's visits to get to a diagnosis of his EGIDs.  An upper GI was performed, to check for anatomical issues and problems like Delayed Gastric Emptying.  That involved everyone waking up BRIGHT AND EARLY and making the trek to CHOP Exton.  At this point, Aidan knows that being allowed to leave the house in pajamas is not a great sign.  It usually means procedure day. 

I hate how tiny and scared he looks here.  He actually did really really well.  This was taken right before they gave him barium to drink.  There were 2oz in the bottle and we were told he needed to drink at least 1/2 an ounce.  My little champ drank all 2oz and cried for more.

Once he finished the barium, we had to hold him down (while he screamed at the top of his lungs, and YES, we do bring earplugs with us) for xrays.

Aidan's Upper GI was blessedly normal.  It showed his reflux (we know) but nothing else.  No deformities, no DGE, nothing else of any concern at all.  What a relief - but not an answer.




Next, we scheduled a scope.  A "scope" for Aidan is really an upper endoscopy and a colonoscopy, both with biopsies.  Dr. Liacouras sends a camera in to examine his esophagus, duodenum, stomach, and colon.  While he's in there, he takes small samples from several places in each area and sends them out to be examined under microscope.  A child can look totally normal visually (Aidan did) but still have terribly high numbers of eosinophils (again, Aidan did).

Aidan's scope was done on December 14, 2011, when he was 11 months old.  The procedure went very well.  He had a blast in the waiting room and charmed all of his nurses.  He's the bravest kid I've ever seen, really.

And you can't tell me you've ever seen a kid who looks cuter in CHOP jammies!

As we all know, Aidan's scopes were not normal.  They were what led to his diagnosis of Eosinophilic Esophagitis (25 eosinophils per high powered field) and Eosinophilic Colitis (100+ eos per hpf).


This was what tied all of the pieces together.  The pain, the screaming, the reactions to food, the failure to thrive, the refusal to eat.  It all makes sense in light of what we now know.

I am thankful that we've found doctors who knew what to look for and how to help him.  I'm excited to move forward.  There may be no cure (yet!) but we will make his life better!