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From:
Date: 10 Oct 2005
Time: 23:44:47
Remote Name: 205.188.116.136
MY SON KARSON WAS BORN ON 7-12-05 WITH DEGEORGE SYNDROM.THIS SYNDROM CONSISTS OF ALOT MORE THAN THE HEART DEFECTS WHICH HE HAS.HE HAD HIS FIRST HEART SURGURY BEFORE HE CAME HOME FROM THE HOSPITAL. HE WAS ABOUT 3 WEEKS OLD.HE IS ON A FEEDING TUBE BECAUSE OF HAVING THE SURGURY AND PROMBLEMS FROM NOT BEING ABLE TO SWOLLOW RIGHT.HE HAS ONLY GAINED 2 POUNDS SENCE HE WAS BORN.THE PROMBLEMS WITH HIS HEART IS ONLY THE BEGINING.THIS SYNDROM EFFECTS THE TYMUS GLAND ,THAT PRODUCES T CELLS FOR THE IMMUNE SYTUM.THEY HAVE TESTED HIS IMMUNE RESPONSE AND IT IS LOW.BUT SO FAR HERE AT HOME HE HAS BEEN DOING WELL.HE HAS DOCTORS APPOINTMENTS AT LEAST THREE TIMES A WEEK .THERE IS KNOW WAY I CAN WORK OR ANYTHING ELESE BECAUSE HE REQUIRES SO MUCH SPECIAL CARE .HE HAS TO HAVE OPEN HEART SUGURY BEFORE THE END OF THE YEAR TO CORRECT THE HEART DEFFECTS.DURRING MY STAY AT THE HOSPITAL THERE WAS ALOT OF CHILDREN THERE WITH THESE TYPE HEART PROMBLEMS AND MOSTLY ALL OF THEM HAD A CHOMOSONE DISORDER SO I THINK THAT YOU MIGHT WANT TO BE PREPARED FOR THIS .I SPENT THE LAST MONTHS OF MY PREGNANCY HOPEING THAT HE ONLY HAD THE HEART DEFFECTS BUT THAT WAS NOT THE CASE.BUT THE HEART PROMBLEMS ARE THE WORST OF THE SYNDROME AND THEY CAN BE CORRECTED.EVERY CASE OF THIS SYNDROME IS DIFFERENT.A BABY COULD HAVE ALOT OF THE PROBLEMS OR NOT THAT MANY AT ALL. THEN SOMETHINGS THEY CAN GROW OUT OF.SO I HAVE ALOT OF HOPE RIGHT NOW FOR MY SON THAT HE WILL LIVE A NORMAL LIFE BECAUSE THERE IS KNOW WAY THAT WE CAN TELL RIGHT NOW HOW BAD THIS IS GOING TO BE .I CAN TELL YOU THIS IT IS THE HARDEST THING I HAVE EVER WENT THROUG AND I HAVE LOST A HOME AND EVERYTHING IN IT AND WITH THAT YOU CAN ALWAYS REPLACE THINGS BUT WATCHING A CHILD GO THROUGH HEART SURGURY AND ALL THE PROMBLEMS AFTER IT IS HARD BECAUSE YOU HAVE NO CONTROL OVER ANYTHING .I KNOW THAT ITS NOT OVER FOR US WE HAVE JUST BEGUN WITH THIS BUT FOR SOME REASON ITS NOT AS BAD AS WHEN I WAS SITTING IN THE DOCTORS OFFICE AND THEY TOLD ME WHAT I WAS FACEING.SOME HOW YOU FIND THE STRENGTH AS A MOTHER TO DEAL WITH IT .I DON'T FEEL SORRY ANYMORE AND WONDER WHY THIS HAPPENED TO MY BABY .I KNOW THAT THIS WOULD NOT HAD HAPPENED IF I COULD NOT HANDLE IT AND THERE IS ALWAYS SOMEBODY GOING THROUGH SOMETHING WORSE.