Posted by Amy on 3/24/2008, 5:48 pm, in reply to "Re: my son"
76.188.240.86
Shay is on his 9th surgery. He has had one mandibular distraction, cleft repair, teeth pulled, trach out (the best part), and a g-tube in. Now we are at a part where we are to go see if his skull is growing big enough. That was a suprise we had no clue to keep track of. It is a constant fight because we never know what is next but he is great. A
--Previous Message--
: Welcome Amy, it's a wonderful site with lots
: of good information, advice, suggestions and
: comfort.
:
: My 6 month old has PRS and Stickler
: Syndrome. I was born with PRS as well back
: in 1971 and if it is any consolation, no one
: would know unless I told them. My jaw grew
: out on it's own, my palate repaired at 15
: and 18 months and even though my hearing is
: subpar, I am prety good singer
:
: Would love to hear more about your son!
:
: Laurie
:
: --Previous Message--
: I had no idea a sight like this existed. My
: son, who is now 26 months has pierre robin
: sequence. Very difficult to get info on or
: learn about. This is great. Amy
:
:
:
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