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St. John's University Cerebral Palsy List
Date:
Fri, 9 Nov 2001 17:28:46 -0800
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Oh please give me a break.Do I want to "fix" Alex?
Heck no, he is a terrific little guy in his own right.
Do I want to lessen his spasticity? You bet I do as
much as possible. Is that not accepting his
disability? Not at all. As things stand today he'll
have CP for the rest of his hopefully very long life.
His CP affects his GI system. The spasms of the
digestive muscles when he was an infant was such that
he vomited every meal. Should I have accepted that
spasticity and watch him waste away and refuse to do
the fundoplication and have the feeding tube placed.
Should I have just accepted the spasticity and watch
him waste away( he** he almost did, he was all of 16
pounds when they did the surgery at 18mo) What I don't
accept is the notion that since he has brain damage he
isn't worth the treatment.
Should I have accepted those spastic little arms and
hands that got stuck close to his torso and not enroll
him in intesive PT. Heck no or I would have missed
that very first hug he was able to give me all by
himself when he was  2 1/2. What I won't accept is
that because he has CP he isn't worth the money for PT
to the insurance companies. Should I have accept those
spastic little legs and feet that kept pulling him
over and never enabled him to use his hands. Should I
accept the spasticity that prevented him from walking
and joining his classmates. It really is hard to be on
an equal level with your peers when your view of your
classmates shoes because spasticity keeps you from
achieving anything but an ants view. Or should I have
done the research and soul searching and allowing the
SDR surgery that did lessen his spasticity so he can
now use a walker and a wc independantly. I will not
accept however denying him a chance to stand proud
with his friends. He will always have spastic quad CP
but your darn tooting I intend to enable him as much
as possible.
Joanne


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