Sunday, April 21, 2013

baby steps....

What a difference almost four years makes. 
Here are Alex's AFO's (ankle-foot-orthotics)
and now on the right his HKAFO's (Hip-knee-ankle-foot orthotics)
For those unfamiliar with these acronyms,
these are all custom made braces that help keep a childs feet in the right position,
and when the child is older helps to provide support in standing and/or walking.
 Look at these itty bitty ones.
I didn't think to keep pairs, just one brace from in each size.
those first three are all just slightly different sizes.
I put a chapstick in the smallest one to give you an idea of the size.
The first one was from his NICU days when he was just a pound and a half.

In true Alex fashion, he continues to defy what all 
the "experts" predicted.

We were told to be prepared that Alex would likely hate his new braces,
that they would be cumbersome, heavy and awkward,
that he'd likely be fearful in them, especially at first.

Honestly I don't think any one was trying to change our minds about
our decision in trying them, just trying to help us be realistic.

But actually both of my boys tend to be the exception to the rules.
I laugh when I hear a doctor say "well its not common but....." because
what follows the "but" is usually what our boys do--good and bad :)

Alex has LOVED his braces from the first go. I mean truly!!!!
He was never hesitant, fearful, or even bothered by how much
his momma has to struggle getting his legs straight to get in them
(the cumbersome part was definitely true).

He ASKS to stand. 
Something he NEVER did in almost three years of using his stander.

Here he is the first time at home with them, reaching his play kitchen
for the first time without me holding him up to it.

and just a couple short weeks later.....
he's asking to walk!!!!!

Let me preface by saying that it is truly unimportant to Mark and I
if Alex walks or not. I know that might sound strange, but its true.
Years ago we came to terms with the fact that Alex was born the way he was, 
and truly a gift to us (as is his brother). It was critical to us that Alex
be able to get around in whatever way he could to be independent and that he be happy!!! 
When he was a year and a half old we found all of those things in his little speedy wheels. At that time he didn't have the core strength to hold himself up, even with all of his efforts and therapies, so we couldn't even consider any type of braces designed to help him walk. Honestly, when we saw how happy he was able to maneuver around in his wheels, we really haven't looked back since.

We'd revisit the options from time to time with his therapists and doctors but we didn't fixate on it. Alex was happy, thats all we needed (and still do).

These last six months in preschool, he has had an explosion of new skills,
developmental and physical. He's gotten sooooo much stronger. When
he started pulling himself to his knees for the first time, we were in awe.
When he started verbalizing wanting to stand, we talked to the right people
and got what he needed.
and now......

He's telling us HE wants to walk. 
This is brand new to us. 
Mark and I are really kind of standing back, 
keeping our expectations in check.

I truly don't know what his body will let him do 
but he's got his mind set on it. So its my job to do everything
in our power to help support him.
where-ever that leads.

His therapist has ordered him a walker just his size,
we are waiting for it to come in.

She explains we will try having the walker in front of him
and he will move the walker forward and use it as leverage
to swing his legs forward after it, and so on.

In the meantime, he's happy enough to have us
help hold him while he practices.

He's usually exhausted after doing a couple feet,
he rests/plays and then with the brightest smile
and the sweetest little voice looks at me and says
"mommy: I want to walk again."

It doesn't look like traditional walking ofcourse.
He is paralyzed below the hips and can't move his legs.
But when you hold him, you can feel EVERY muscle in his core
as he's telling his body to move forward.

He inspires with his determination!

This isn't the best video but its the only one I have for now.