Hello,

This is my first time participating in this group.  I would like to introduce
myself, but mostly my son.  My name is Michelle and I have a 4 year-old son,
Joshua, with Ataxic Cerebral Palsy.  Joshua will be 5 in August, and I feel
he is a remarkable child (especially under the circumstances).  He is very
determined, that is what has kept him going.  His last Developmental test put
him about 3-6 months behind cognitively.  His fine moter is about that of a 3
year old and his gross motor at 18 months.  Joshua can independently sit,
crawl, hop, do just about anything any other kid his age can, however, his
stability is very poor (mainly in his trunk).  He walks short distances
independently with a moderatly wide gait and long distances with a walker.
He has a wheelchair, but I refuse to use it unless it is absolutely necessary
so he won't over exert himself (school field trips, a day at Sea World). He
has also been diagnosed with Microcephaly and had corrective surgery for
strabismus.  Currently Joshua eats by a g-tube due to a lifetime of
projectile vomiting (gagging after he had a nissen fundoplication at age 10
months with the g-tube put in).  I believe Josh refuses to eat from the
psycological connection he has made between eating and vomiting (gagging).
There was a time when he ate by mouth (until age 10 mos.) and I believe the
phenobarbitol elixer he was on only for precaution played a part in his
vomiting...but I don't know what to do now, he has been off it since he was 7
mos.

I am writing this now, because it is important for me to know what Joshua
will need and go through as gets older.  To be honest, Joshua suffered 11
minutes w/o oxygen at birth do to negligence of the doctor.  Tomorrow I am
settling a 4 1/2 year old medical malpractice case (against the government (
a military hospital) no less), hopefully.  The problem is unlike with
civilian doctors and hospitals, I need to have a lot of proof , information,
insight just to get anywhere.  I could probably sit here and pretend to know
what life will be like for my son and all the things that he will need to
adapt to this world.  I really feel that I will leave out a lot.  I would be
grateful if anyone could help.  Definetly knowing the hardships at different
ages would be of great assistance.  To prevent clogging up the list you could
e-mail me directly at [log in to unmask]  Thank you

Michelle: mom to Kassandra 6, Joshua 4 (cp, microcephaly, g-tube, strabismus)
Donovan 21 months, and one on the way

Sorry for posting to two lists.  (is that cross-posting?)