Thanks so much. We are on North shore of Oahu and he attends Sunset
Elementary which is across the street from Pipeline, one of the most famous
big wave beaches.  In fact if they have to do a helicopter rescue they land
on the school grounds but this has not happened since we have been here.
 From reading this list I know he will have a good life like so many of you
have made for yourselves.
We try not to baby him but because he is so social he knows how to wrap us
around his finger....we sometimes do.  Once he said to me, nana did you
forget, I have cp, that is too hard for me to do. I said ok let me help
you. He is too tight to totally dress himself but does undressing
independently and bath and teeth brushing.  We have definitely taught him
it's ok to ask for help. We are so lucky that he escaped many problems, no
problem with appetite or digestion. Friends are amazed at how much he eats
and drinks to stay hydrated.
thank you for answering.

At 01:26 PM 6/15/2005, you wrote:
>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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