[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Hope on 8/29/2004, 7:48 pm
205.188.116.15
She is 17 now. Born with CES- only part of heart, coloboma,other organs affected. My daughter was 1st to receive Fontan to repair heart when she was 18 months old. Up to that point they weren't doing this until they were in school. The kids didn't do well. She has been one experiment after another. She has had so many surgeries. Too many to count. Her medical records are like a library. Working on her 4th vol. each one 3inches thick. I know first hand how hard it is to watch your child go thru this. Anyone wanting to talk, contact me. Please. I wish I had had someone to talk with when we were helping my daughter with this. Of course it isn't over. It will never be over, but what we learned can help others. Thanks! Hope
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