hmmm...wise advice because he wants to please us he might try too hard
also. He can ride his tricycle 2 miles. We often play a counting game. Nana
count how fast I get into the car. We have a trampoline and he could not
even stand up on it at first and now he has taught himself to jump alone
and recently I counted 535 jumps his record before falling. None of us
could belelive he could do it. He is motivated by a two year older brother
as well. Thank you all.
At 07:09 PM 6/15/2005, you wrote:
>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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