welcome aboard linda,
  it appears that you all have gotten a lot of ducks
in a row on helping Case. he sounds like a small
wonder. you'll gets lots of infomation here. my first
bit is to tell you you are on tract. help him adjust
where necessary and don't baby him.
  i am ken, a 56 year old retried computer programmer.
i have two children and two am a grandchildren. i live
in metro atlanta.
  by the way, i like hawaii. what island are you on?

--- Linda Walker <[log in to unmask]> wrote:

> Hello,
>
>         I do not have cp but am a family caregiver
> and joined hoping to learn and
> to get advice from people who've already experienced
> what my 6, nearly 7,
> year old fantastic grandson, Case is going through.
> He has moderate spastic
> diplegia, speaks well (lots of speech, occupational,
> physical and vison
> therapy so far) and is mainstreamed in school with a
> one on one because
> there are some things he has not yet mastered.  He
> walks, falls alot, and
> loves to run.
>         Once when watching him run, he fell right in
> front of me and I noticed
> that the reason he fell was because he looked down
> at his feet. That day
> was a huge breakthrough because when I taught him to
> look out a little
> farther he ran all over the park without falling. It
> was amazing and he was
> so pleased with himself.  Before this day, I thought
> he lacked balance, but
> the therapists said it was not a balance issue and
> that caused me to look
> for other reasons causing him to crash. I still
> think his balance may be
> affected by cp despite what the therapists said.
> This same eye tracking
> issue seems to affect his tricycle riding. He
> doesn't look far enough out
> to keep from bumping into things but we are working
> on his being able to
> ride home from school without help. He's pretty
> close on this.
>         His father moved the family to Hawaii
> because the school in Hawaii was
> willing to let him run, whereas the schools in Los
> Angeles wanted him in a
> walker. The school here is terrific as it is all
> grass so he does not fall
> on asphalt and can be more active which he loves. We
> are trying to see that
> he is as independent as possible and also keep him
> aerobicized to develop
> his heart and strength. He is a highly motivated
> child with a terrific
> spirit who would probably fit in well with this
> group when he is older.
>         He has had several rounds of botox and it
> seems to work pretty well on
> him. In Los Angeles they did not sedate him and it
> hurt him so his mother
> did not take him back. In Hawaii the doctor sedates
> him, this is so much
> better. I was surprised we were not offered that
> option before and didn't
> know about it but there is no reason he or anyone
> should suffer. I read
> about how scared some people were to get botox and
> how it left them
> traumatized. I don't see how doctors can consider
> doing this without light
> sedation.
>         The doctors are suggesting the heel cord
> lengthening operation. I am
> wondering if anyone here has had it. We have heard
> the older he is when he
> has the operation the better the result. Does anyone
> have any first hand
> experience they want to share with me? Is there
> anythng that is not as
> dramatic that works well? He is stretched daily and
> learning to do his own
> exercises. The whole family exercises regularly so
> this helps motivate him.
>         Anyhow I probably won't stay on the list
> because I feel like I don't
> belong. I hope it's ok to ask these questions.
>
> All the best to everyone,
>
> Linda
>




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