Heather, Wow, nice to meet you...Sounds like you are doing well. I have a son,
Skyler he is just over 27months old now, he has sticklers and prs...with the
trach gtube package :) hes doing well. and we are HOPING to remove all tubes
next spring. we were suprised to find that sticklers ran in my family. When we
planned tohave my son, i expressed my concern about my families history of a an
isolated cleft palate in my mother and my brother and my self...my doc told me
not to worry. so i didnt, until he was born, then it all went down from there ;)
so now, unofficially I have been diagnosed with sticklers as well..i am
extremely near sighted, actually since skylers birht and diagnosis, i have been
to the eye doc for the concern of retnial detatchemnts..so far so good. but i
was told that i am borderline leagally blind...eek!! Anyway, I would love ot
chat with you. where do you guys live, we are in washington. and soon hope to
start adding on to our family, even though the risk of
another ss prs child is high, how bad could it be ;) i mean look at your family,
your children are doing well, right? talk to you soon.
Casie mom to Skyler 2, PRS SS Trach Gtube Glaucom Hypotonia Repaired Palate
Repaired Hypospadious...Crazy man!!