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Name: momof3onewithcp
[ Original Post ]
HI I AM NEW TO THIS SITE. I HAVE 3 CHILDREN. MY ELDEST IS 71/2. HE WAS DIAGNOSED IN UTERO WITH A LUNG CONDITION CALLED HYDROPS. HIS LUNGS WERE FULL OF FLUID AND NEEDED DRAINING TO HELP HIM SURVIVE. HE WAS 7 WEEKS PREMATURE. HE HAS BEEN DIAGNOSED WITH QUADRIPLEDGIC CEREBRAL PALSY. HE IS ALSO PROFOUNDLY DEAF WITH A COCHLEAR IMPLANT. STILL NONE VERBAL BUT WE KNOW HE IS VERY BRIGHT. KNOWS THE WAY TO TIM HORTONS/MCDONALDS AND GRANDMAS HOUSE.
I GUESS I AM JUST LOOKING FOR SUPPORT FROM OTHER PARENTS WITH SIMILAR CIRCUMSTANCES. IT IS HARD SOMETIMES BUT I WILL NEVER GIVE UP FIGHTING FOR HIM. HIS SMILE AND EYES MAKE IT WORTH WHILE. ALSO WONDERING ABOUT HOOKING UP WITH THE SHRINERS. WE ARE LOOKING INTO AN INTERTHECAL BACLOFEN PUMP AND INPUT ON THIOS WOULD BE APPRECIATED. HE IS 38 LBS AND ALTHOUGH HEALTHY NOW WE ARE GOING TO A G-TUBE CONSULT NEXT WEEK ANY INPUT ON THIS WOULD BE GREAT. SOMETIMES JACOB HAS REALLY PAINFUL CRYING BOUTS AND IT IS FRUSTRATING NOT KNOWING HOW TO HELP HIM.
LOOK FORWARD TO SEEING YOUR RESPONSES. ALSO SHARING MY INPUT ON THIS SUBJECT WITH OTHERS. THANK YOU
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Name: lucie | Date: Nov 10th, 2006 8:29 AM
Hello i know this girl who has a similar condition, well she is my friend. She has had a cochlear inplant aswell, she has an undiagnosed condition. But the eyes and smile are what make her who she is.

She had severe headaches from the cochlear as it had moved slightly along her skull so it had to be removed. She was close to death as it was literally just a couple of milimetres away from the main artery!!

But if you need to chat im here

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