[ Post a Response | Cat Eye Syndrome Interest Board ]
Posted by Bucky Farrow on 10/26/2004, 9:26 pm
129.109.74.83
My beautiful daughter Reagan was born with CES and had TAPVR repair when she was 4 days old. She also has ear pits and an imperforate anus which will be repaired in the near future. She has recovered well from her heart surgery and is now a very happy 2 1/2 month old. Her major problem now is feeding- she takes all of her breast milk through a nasogastric tube and while she used to take some from a bottle she can't seem to do even that anymore. We are contemplating a gastrostomy tube since we don't know if or when this will ever get better. Can anyone else share with me their experience with feeding problems in their child with CES? She has some degree of hemifacial microsomial and a marginally small mandible, but she does not appear to have any major anatomic problem that would impair her feeding that much. Any information would be greatly appreciated. Ironically I am not only Reagan's father but a general surgeon who knows enough about some things to help her get good care. I am not an expert in CES, but if I can help anyone with a general medical question related to their child with CES I'd be happy to help. Thank you for providing this resource to let parents reach out to others in this difficult situation.
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