it is good that Case already knows when and how to say
i need help. many of us did things that it would have
been better had we knew that we were pushing beyond
what we could wisely do.

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

> 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
> > >
> >
> >
> >
> >
> >__________________________________
> >Do you Yahoo!?
> >Make Yahoo! your home page
> >http://www.yahoo.com/r/hs
>




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