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Asher had surgery

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Hi all,

I just wanted to quickly e-mail you all and let you know Asher had his surgery Tuesday for his G-tube. I've been staying at the hospital with him and this e-mail is my first quick break home for a shower and to check my e-mail. Unfortunately, I am not able to keep up with everyone's mail right now - but my thoughts are with all of you.

Asher seems to be doing fairly well. Some pain (that's to be expected) but they've begun feedings. I'm anxious and the docs are pretty unknowledgeable about what to feed him b/c we don't know if Ash does have a metabolic disorder or which one he does have, so I'm nervous about whatever formula we give him. I know there are special amounts of fat, protein, and carbs different metabolic disorders require - but, for now, the gastro felt Alimentum would be the best b/c it has fewer long chain fatty acids. Any one know much about this?

Also, the surgeon said that Asher had an "incredibly distended colon" filled with gas so we now know motility issues are a big part of why he doesn't eat. I'm thinking that in the next few months, after we get a report from Shoffner, we may need to head to a ped gastroenterologist who specializes in neuromuscular disorders - anyone know of one?????

Thanks,

Anne R

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