Hi Crystal,
My son is 2 now and he was born with Sticklers syndrome. He had a cleft palate
and Pierre Robin Syndrome (small jaw). I would be happy to talk to you about any
questions your have.
In relation to the sleeping situation my son's dr suggested a tucker sling with
wedge http://www.tuckersling.com and he came home with an Oxygen monitor so they
helped us know he was breathing ok because he had a np (breathing tube) as well.
It is a very scary time but with the knowledge and a great team of dr's I know
you can do it. I am including a few more websites that might help you understand
the condition.

Hope this helps,
Victoria

http://www.sticklers.org/sip2/
http://craniofacial.seattlechildrens.org/conditions_treated/stickler.asp








--- In sticklersyndrome@yahoogroups.com, "calientecrystal" <calientecrystal@...>
wrote:
>
> hI MY NAME IS CRYSTAL AND MY SON IS 24 hOURS OLD AND HAS BEIN DIAGNOSED WITH
STICKLERS, hE HAS A U SHAPED CLEFT PALLETE AND SMALL CHIN ETC. HE IS ON
BREATHING TUBES, HAD TO TAKE OUT FEEDING TUBE DUE TO BLOOD IN THE STOMACH WHICH
HAS STOPPED BUT THEY DONT KNOW WHAT HAS CAUSED IT. i;M A MESS AND WOULD LIKE TO
TALK WITH SOMEONE OR PEOPLE THAT HAS BEEN THREW THIS AND CAN HELP ME GET THREW
THIS TIME. ALSO ANY SUGGESTIOND ON HOW TO LAY HIM SO HIS AIRWAYS WILL OPEN UP
BETTER WOULD BE GREAT!!
>