Thursday, February 11, 2016

5 years of Polymicrogyria

Today marks 5 years since we sat down with our amazing neurologist as she explained to us what Annabelle's brain looked like along with what it all meant.  I will never forget the feelings that came over us as we sat in that room.  She explained to us the term Polymicrogyria and what a corpus callosum was, she showed us her brain compared to Annabelle's, she told us of the possible grim future that "could" be.  We were so scared, sitting there holding our 2 month old perfect baby we cried.  I think that appointment lasted well over an hour, maybe two.  She did not rush us but gave us all of the time we needed.  She also gave us a ton of information - new terms such as Early Intervention, Medicaid waiver, Service Coordinator.  All things that became part of our new "normal".

It also marks 5 years of PT, OT, Speech, Assistive Technology, Vision therapy, ABM, Hippo therapy, Special Ed, swimming, gymnastics, dance, the list goes on and on.  It marks 5 years of endless doctors visits, some people do not realize the amount of specialists who are involved.  Our short list is pediatrician, neurology, GI, endocrinology, genetics, eye doctor, nutrition, orthotics, orthopedics.  And these appointments are not once a year, most are every 3-4 months.  As the years have gone by, the appointments have become more spread out, unless needed.

In spite of all this, we pushed on.  We tried, even on the saddest days, to keep a positive outlook.  We celebrated EVERY small milestone, none were too small to be proud of.  She crossed midline, she tapped two blocks together, she made a sound, she tracked an object - our memories are much different than most parents who remember the first word and first steps (although that day was amazing too).  

So on this anniversary I look back with a happy heart.  Happy that Annabelle has come so far, happy that she is (almost always) smiling, happy that she has beat many of the odds that doctors gave her, and forever happy that she came into our lives.  I can't imagine a day without her!  

On another note, this week being Feeding Tube Awareness Week, Annabelle had surgery Monday to get her new "mini button" for feeding.  The last feeding tube she had was a long tube coming out of her tummy.  Now the button is all she has, we connect the tube only when she is eating.  As with every surgery, she was a total rock star.  She was back in school the next day!  As always, some pictures of our silly, spunky girl from the past month or so.

she wanted to be a kitty so she drew on whiskers

After school in her spider hat

playing grocery shopping, hard to get a
non-blurry picture while playing

ready for dinner!

playing some drums

Rainbow fist musical with Miss Kate
(one of her music therapists)

Annabelle with the cast of Rainbow Fish

ready to go out!

Made her a new felt board

playing in the little bit of snow we have gotten

eyes dilated & having lunch at the eye doctor

We went to see The Ugly Duckling ballet 

walking the stairs at the museum - went all the way on her own!!

First time she could push the shopping cart on
her own at museum Wegmans

we love Strong Museum of Play!

LOVES painting, mommy loves mess free paint pens :-)

brown bear matching

even with the tube we work on oral motor so she doesn't loose it

"picking flowers"

having dinner with Clyde on watch

She loves sitting in her pink Bilbo and watching
videos when mommy is on her computer

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