Thursday, May 22, 2014

Thankful Thursday

Today I am thankful for PROGRESS.

Not only has Claire been working on standing, holding a crawling position, & sitting, she has also been spending lots of time in her therapy tub "swimming," kicking, & moving herself around as best as she can! It is so cute to see her kicking her little crossed legs and moving her whole body in the process. She has the most determined little look on her face as she swims! She takes her workouts VERY seriously, and ummm, I have no f'ing clue WHERE she gets this (HA!), but she appears to be VERY competitive.

May 19, 2014  ~  Therapy tub sisterly love

So, when we took her out to her therapy tub yesterday, laid her down to change her into her swimsuit, and SHE STARTED KICKING WITH ANTICIPATION BEFORE EVEN GETTING INTO THE WATER (!!!!!!!!), we all could not believe it!!! This was the *first* time she had ever done this. This was the *first* time she ever knew what was coming & SHOWED US in her own little way! This might be the *FIRST* time she ever showed evidence of memory and/or connecting a location with an activity. My girl's got it goin' on, yo. OMG. Still in awe!!!

Oh, and to that doctor who oh-so-carelessly-and-emotionlessly told us, "Your daughter has no cognitive processing going on whatsoever" after viewing her "extremely abnormal" EEG & doing a 45 second test involving black/white pictures when she was 3 months old with no concern or sympathy for our crying/panic/shock/extreme sadness/hope/bigger-than-he-could-ever-even-imagine love for our daughter...

"I don't know where I'm going, but I'm on my way."
~Carl Sandburg


Usethebrains Godgiveyou said...

Why do you hate science? Awe, I'm just sh#tting ya...seems like a lot of mom's get pretty pissy when Doctors/Scientists try to shove something up their hiney's.


Thanks, that felt good.

Gwen said...

@usethebrainsgodgiveyou -- Shoving reality up my ass is one thing, but a completely wrong diagnosis/prognosis & ZERO HOPE is a whole 'nother thing. JUST SUCKED when what we most needed at that moment was a nice combo of both -- statistics of what they see/know paired with the reality of the situation which is NO ONE KNOWS WHAT THE FUTURE HOLDS & YOUR CHILD IS GONNA WRITE HIS/HER OWN STORY! Love EVERY MINUTE of the time you do get!!!

I just don't get it. These nasty docs' very words which they said so flippantly were about to change the course of our lives -- and they didn't even find a way to say them nicely. NO compassion. Just hurt so much. And the bottom line was THEY WEREN'T RIGHT.

If this wasn't cognitive processing, I don't know what it was! Just SO proud of my girl & I don't care if it took almost 13 years to see her achieve this -- IT WAS SO WORTH IT!!!!!! Thanks for letting me vent! LOL

mama of many said...

Never give up that hope Gwen.
I was told that Teal'c had no ability to process things as well, but now at almost 6 years old he can crawl, he speaks a few words but mostly communicates with sounds. he processes things, but slowly. he's gone much further than anyone ever thought he could he's even learning what "no" means as he often likes to get himself into trouble (mostly by banging against the door making very loud noises)
The very first time we noticed that he was processing something, that he understood something he was almost 2 years old already. but it was sporadic at first, and sometimes we still aren't sure what he can understand and what he can't but we know he's in there.
I imagine it's like he's trapped in his dysfunctional body and sometimes that holds him so tight he can't "get out" to tell us he's understanding what's going on, but other times he comes to the surface and we see the amazing kid he is.

your video of Claire holding a crawling position is so inspirational. she's a rock star!

Anonymous said...

I never doubted her for a moment! Always remember, that many times a doctor is trained to give the worst-case prognosis, because they do not want to give false hope or be sued. Not that I agree with that, of course. I've learned to never take a poor prognosis to heart, because it almost always ends up being wrong! Always have hope even if the doctors don't ♥

Also, I don't think you doctor understood what "No cognitive function" means. Without cognitive function, your daughters would not smile, cry, recognize people, have preferences, or have movement besides reflexes. But they already do all of that! I can say with 100% certainty that both of your daughters have cognitive processing, screw what those doctors say! ✊

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