It is quite a process. My son has had open heart surgery as well as hearing loss
and vision impairments and now am working on physical strength in the lower
extremeties with braces on his feet
Sent from my BlackBerry Smartphone provided by Alltel

-----Original Message-----
From: Jennifer Ahlman <jenraylay@...>

Date: Thu, 16 Apr 2009 14:27:56
To: <sticklersyndrome@yahoogroups.com>
Subject: Re: [Stickler Syndrome ] hELP!


Hello crystal,
Both of my girls have sticklers ages 2 and 7 and I know what a shock all this
can be. As for diagnosis they haven't found the right mutation in my girls genes
yet so if the test comes back neg it dosn't mean he dosen't have it just that
they have found the right mutation yet. My younger daughter was also born with a
cleft palate and we had no idea anything was even wrong untill she was born. She
didn't have any breathing problems though. Kids with cleft typically need ear
tubes. My daughter is going through speech theapy right now and making some
progress. Also have to watch later for eye issues both girls are nearsighted.
I know this is alot to process. You have a baby thinks everything is perfect and
your world gets turned upside down. I know you'll be able to pull through this
just as I was.

--- On Thu, 4/16/09, calientecrystal <calientecrystal@...> wrote:


From: calientecrystal <calientecrystal@...>
Subject: [Stickler Syndrome ] hELP!
To: sticklersyndrome@yahoogroups.com
Date: Thursday, April 16, 2009, 5:26 PM








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!!



















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