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Subject:
From:
Elaine Taylor <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Mon, 13 Sep 1999 15:23:27 EDT
Content-Type:
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Hi, my name is Elaine, and Trisha so kindly invited me to be part of your
group.  From what I've read over the past couple of days,  I can tell that
this is not going to be a boring list :)

My family and I live in the Southern part of New Jersey.  We have 7 year old
twins, Alex and Briana.  Both have spastic quad cp, and are in power chairs.
Both are verbal, eat by mouth, Briana is very intelligent, Alex is a bit
behind.  We're not sure of Alex's vision (Dr. says it 20/600, I think it's
better than that), he's had about 25 surgeries, most for shunt malfunction
for his hydrocephalus, 1 hip surgery, 2 eye surgeries.  Next Tuesday (9/21),
he's having percutaneous lenghtenings done to his hamstrings and adductors.

Briana on the other hand has escaped all surgeries until now.  On November
2nd, she is going to undergo a hamstring transfer.  The dr. wants to transfer
hamstrings from the back of her leg (knee area) to her butt.  She will be in
a Spica for a month, the no sitting for 3 months after the spica comes off.
Therapy twice a day for 3-6 months, and the final result will be standing
bearing her own weight, and taking steps while holding on to a walker or my
hand for balance.

Unfortunately, she does not want to undergo the surgery, but since she has no
idea what it's like to stand on her own or take steps, I don't think she can
really grasp the idea of what it means for her future.

Anyway, that's more than enough babbling for a first post.  Hope to get to
know everyone, and looking forward to some new perspectives on some of the
typical problems.

Thanks,

Elaine

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