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