Posted by Laurie on 3/24/2008, 6:46 pm, in reply to "Re: my son"
68.37.25.8
Wow - 9 surgeries. That is tough. My son was fortunate enough to be considered "positional" and was on two monitors until 3-4 months of age so that we could monitor his heart rate and breathing. He is now on nothing and thriving - he just had his 6 month check up and is 28.5 inches long and 17.5 pounds - long and thin! He had tubes put it at 4 months b/c he thick gooey fluid in both ears, but I hope and expect that after his cleft palate repair at 15 months (this December), he will not need any further intervention other than speech therapy and possible hearing aids down the line (his syndrome usually involves nerve deafness and I sport hearing aids myself when I need to.)
Have the doctors given you any clue as to why your son has PRS - isolated vs. syndromic? My family and I always assumed my PRS was isolated, but after my son was born with the EXACT same thing, he was tested and tested positive for Stickler Syndrome.
Please keep us all posted on your son's development and progress. I have never heard of skull size/growth associated with PRS - can you tell us more about that?
Laurie
--Previous Message--
: 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
:
:
:
:
:
Message Thread:
« Back to thread