[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Pam
on 10/27/2004, 10:23 pm, in reply to "Feeding Problems"
4.159.11.182
My son Taylor (8 yrs. old) has Schmid-Fracarro Syndrome (also known as CES). He has had four open heart surgeries and is in line to have his fifth. He had his Mic-Key inserted at three months of age. He did not have the stamina to eat orally and was aspirating. The Mic-Key was removed when he was approximately 3 yrs. old. We loved the button. It was superb for meds (especially potassium, yuck). We weaned him for approximately three months before we actually removed it. We also had another series of swallow studies done. He eats (and eats) everything by mouth without any difficulties. The other reason for removing it was that Taylor discovered he could use it like a "fire hose" and was pumping Pediasure all over his room and crib!!! Not to mention, he managed to pull the entire button out a number of times. I hope this helps!
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