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Rickie, I felt a need to respond to you, not because i can be of much
help, i'm pretty much a new comer to this list and most know a lot more
than i. but i felt a kinship because i too have a child with tm, his name
is jake and he is 14, he got tm in june of 97. i wish it was me instead of
him, but i probably wouldn't handle it as well as he has. you don't say
anything about pt. jake is paralyzed completely from the chest down. he
still goes to pt at least once a week because i insist. the insurance
wanted it to stop because he had learned everything he could as far as his
upper body and transfers from the wheelchair, etc. but i got the dr to
write a letter to them saying he needed to learn more. i exercise his legs
every morning before getting out of bed and he moves them with his own
hands alot during the day, just to keep the old muscles limber. he too is
getting scoliosis and the brace they gave him to straighten out his spine
leaves him unable to do his own transfers or to cath himself, so he said
forget it i will keep my spine limber myself by moving it alot so it won't
get rigid, so what if it is crooked, just as long as i can move myself
around.. you say you wish you understood why. well, rickie this is a
random universe and no one will ever beable to answer that for you. we
don't know why, we just know that it did happen and now...what do we do to
make it better. life in a wheelchair isn't as bad as no life. jake has a
hand pedaled bike, has gone para-skiing and dog sledding this winter. he
doesn't always feel great but he takes his pain and deals with it better
than most .he has learned to slow his life down and take interest in new
things and so has the rest of our family. sometimes its a bummer but
mostly i look back on those first two weeks he was in the hospital and
thank god he is alive. i thought he was going to die, and now he is bake
to taking 20 mile bike rides with me, and he is a real cool kid to ride
with. Laugh everyday with your child about something. laughter will keep
you going. write back, we probably have alot to say to each other. judi
----------
> From: Dippy Smothermanby way of James Lubin <jlubin(AT)eskimo.com>
<Rickie.Smotherman(AT)gte.net>
> To: tmic-list(AT)eskimo.com
> Subject: transverse myelitis
> Date: Monday, March 09, 1998 12:51 PM
>
> I am sending this message in regards to my daughter. On Nov. 11, 1996
she
> was paralized from the waist
> down. She complained of her lower back hurting so I told her to go take
a
> hot bath. She went to take the bath
> and when she sat down her legs went numb. I took her to the hospital and
> she was transferred to Childrens
> memorial hospital in Chicago. She was diagnosised with Idiopathic Accut
> Transverse Myelitis. Since then she
> has recovery on right side but very little on left. She is 14, years old
> and a freshman in High School. This was a
> very big shock to us I still don't understand how this could just happen
> for no reason. I am looking for any help
> I can get. I want to make sure I am doing everything possible for my
> daughter. She is now developing scoliosis
> and her left hip flexor is contracted. Doctors have recommended surgury
on
> her hip flexors. I have had her to
> many different doctors each doctor has different oppinions on her care.
> Please, any infor that you think could
> help us.
>
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Rickie, I felt a need to =
respond to you, not because i can be of much help, i'm pretty much a new =
comer to this list and most know a lot more than i. but i felt a =
kinship because i too have a child with tm, his name is jake and he is =
14, he got tm in june of 97. i wish it was me instead of him, but =
i probably wouldn't handle it as well as he has. you don't say =
anything about pt. jake is paralyzed completely from the chest =
down. he still goes to pt at least once a week because i insist. =
the insurance wanted it to stop because he had learned everything he =
could as far as his upper body and transfers from the wheelchair, etc. =
but i got the dr to write a letter to them saying he needed to =
learn more. i exercise his legs every morning before getting out =
of bed and he moves them with his own hands alot during the day, just to =
keep the old muscles limber. he too is getting scoliosis and the =
brace they gave him to straighten out his spine leaves him unable to do =
his own transfers or to cath himself, so he said forget it i will keep =
my spine limber myself by moving it alot so it won't get rigid, so what =
if it is crooked, just as long as i can move myself around.. you =
say you wish you understood why. well, rickie this is a random =
universe and no one will ever beable to answer that for you. we =
don't know why, we just know that it did happen and now...what do we do =
to make it better. life in a wheelchair isn't as bad as no life. =
jake has a hand pedaled bike, has gone para-skiing and dog =
sledding this winter. he doesn't always feel great but he takes =
his pain and deals with it better than most .he has learned to slow his =
life down and take interest in new things and so has the rest of our =
family. sometimes its a bummer but mostly i look back on those =
first two weeks he was in the hospital and thank god he is alive. =
i thought he was going to die, and now he is bake to taking 20 =
mile bike rides with me, and he is a real cool kid to ride with. =
Laugh everyday with your child about something. laughter =
will keep you going. write back, we probably have alot to say to =
each other. judi
----------
> From: Dippy =
Smothermanby way of James Lubin <jlubin(AT)eskimo.com> =
<Rickie.Smotherman(AT)gte.net>
> To: tmic-list(AT)eskimo.com
> Subject: transverse myelitis
> Date: =
Monday, March 09, 1998 12:51 PM
>
> I am sending this =
message in regards to my daughter. On Nov. 11, 1996 she
> =
was paralized from the waist
> down. She complained of her =
lower back hurting so I told her to go take a
> hot bath. =
She went to take the bath
> and when she sat down her legs =
went numb. I took her to the hospital and
> she was =
transferred to Childrens
> memorial hospital in Chicago. =
She was diagnosised with Idiopathic Accut
> Transverse =
Myelitis. Since then she
> has recovery on right side but =
very little on left. She is 14, years old
> and a freshman =
in High School. This was a
> very big shock to us I still =
don't understand how this could just happen
> for no reason. =
I am looking for any help
> I can get. I want to make =
sure I am doing everything possible for my
> daughter. She =
is now developing scoliosis
> and her left hip flexor is =
contracted. Doctors have recommended surgury on
> her hip =
flexors. I have had her to
> many different doctors each =
doctor has different oppinions on her care.
> Please, any infor =
that you think could
> help us.
>