Sound Destruction: My Special Girl

Friday, April 29, 2005

My Special Girl

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I realize that many of you have read occasional mention of my special-needs daughter in my various commentaries and perhaps wondered about the nature of her condition. I'd like to take a moment to share that with you (BTW, Strider is not only her Uncle, he is also her Godfather).

My special girl will be 4 in September. She's always been a sweet, smiling, and overall happy girl. She is my second child (her completely "typical" and equally sweet sister will be 7 in June). As such, I recognized relatively early on that my baby girl's progress seemed a bit delayed. Specifically she wasn't learning to sit up (instead she'd slouch/tip over when propped up, even in a boppy), she wasn't creeping or crawling, and even holding her bottle was a struggle compared to the abilities of the other kids in her day care class (I worked full-time back then).

We thought maybe she's just a late bloomer, but we feared that wasn't the case. Our fears mounted when we learned at her 12-month check up that her head hadn't grown at all since her 9-month check up. Since our brains undergo the most growth and development in our first year of life, this was very alarming news.

We took her to a pediatric neurologist where she failed multiple "self help" tests (e.g. when falling, one instinctively knows to outstretch one's arms/hands to block a fall, but our baby girl did not). From there she underwent a brain MRI. We learned from the head of Pediatric Neurology & Metabolic Disorders at Columbia University in NYC that her Cerebellum (the part of the brain that controls balance and coordination) was under-developed. Her's had a nucleus, but the surrounding area that should have been brain matter was actually fluid. He diagnosed it "Cerebellar Hypoplasia" (with accompanying low muscle tone). Through his diagnosis and the insight and test results from a myriad of other specialists we learned that this was not a metabolic disorder, rather just an anomaly. This was simply just the way she was born.

It was explained to us that she had a diminished body awareness coupled with a diminished speed in which messages from the cerebellum traveled to the various parts of her body. We learned that new messages could be remapped from her brain, and repetition of activities would help further imprint the message which would become more and more expedited until ultimately becoming a learned, instinctive function.

She was, thankfully, given a FULL prognosis with a caveat - as long as she showed continued signs of progress and as long as follow up MRIs didn't reveal any digression, she would have the ability to learn to fully function (though they said she may not be a top-level athlete, but that's ok because not many of us are either!).

She began therapy (physical, occupational, speech, and cognitive) at 13-months old. Happily after a few weeks of cognitive therapy, we learned she was a bright girl and didn't require that particular assistance. She received her therapies through the (federally funded) Early Intervention (EI) program. When she turned 3 she was no longer eligible for this program. Following an unnecessarily long, drawn out process, riddled with red tape, she transitioned into the special needs pre-school program at the elementary school, where she rides the handicap bus back and forth each day. Seperately, she continues to participate in private physical therapy once a week.

To date, her MRIs have not shown any digression, and she has made amazing progress. Though her speech is still delayed, she speaks now (quite adorably I might add), eats and drinks independently, sits up tall and steady, crawls independently, pulls to stand, cruises a bit, and is just now learning to ride an adapted tricycle and walk when strapped into a pediatric gait trainer (walker).

She is my special girl, and I'm so proud of her. I'll continue to post with periodic updates for those interested in following her continued progress.

15 Comments:

Anonymous Anonymous said...

May God richly bless you and yours for your steadfast and generous spirit!

~Supernatural Rabbit Scribe

10:03 AM  
Blogger SheaNC said...

Hey, Sar, by some coincidence, I am a social-worker guy who spent a number of years working with the developmentally disabled community. One thing I learned was that the 0-3 age period is very important, so kudos to you for getting her therapy started early! I've known some great physical-, occupational-, and speech therapists, and they can make tremendous progress. Also, it's great that your daughter has no cognitive issues. All in all, I would say she is as lucky to have you as you are to have her. 8^)

11:09 AM  
Blogger Laura said...

Wow. You are a strong women with a child who is lucky to have you.

1:35 PM  
Anonymous bulldog kid said...

The picture of your daughter is very cute. Way to go, girl!!!

3:05 PM  
Blogger MoxieGrrrl said...

She's so adorable :) Just look at that angelface :D

4:12 PM  
Blogger Sar said...

Thank you all so much for your prayers and kind words. It can be a trying experience at times (for example, our current challenge involves troubleshooting how to potty train her since she can't stand unassisted), but she's worth it a million times over. On behalf of my daughter, myself and the balance of our family, we are touched by and appreciate your support.

(Shea - another small world experience, ay?! I'm curious if you're still an active social worker and where your relm of responsibility fell/falls. Feel free to zip me an email if you don't want to discuss in public forum.)

2:36 PM  
Blogger Nedhead said...

Hey, I know the little beauty myself, as well as her family. She is an amazing kid who has an amazing family. Happy, happy, joy, joy!

9:17 AM  
Blogger Sar said...

Aww, thanks Nedhead! :)

9:23 AM  
Blogger strider said...

I LOVE AMANDA.

i am her godfather and damn proud of it.

her, her sister and my daughter are gonna be snowboarding in a couple of years...

nedhead...you bringing your little one?

1:05 AM  
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9:35 PM  

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