Zachary has started to eat! (long)

March 13, 2003

We seem to have finally found the right g-tube protocol (for now)

that helps Zach to get the calories he needs, and yet allows him to

feel an interest in eating.

We are waiting until he has been asleep for an hour or so at night.

Then we run Pediasure through his pump for four hours at 100 cc/hr

for 4 hours. He now grazes all day - to our very great excitement and

delight. He's even willing to drink a few ounces of milk during the

day. I'm sure he's still not getting enough calories for catch-up

growth but I'm just so thrilled he's eating.

's pump goes for 5 hours. She's still hardly willing to eat

anything. Squirrels food in her cheeks or on her tongue, spits out

any residue when she realizes it's there. i.e. when we draw attention

to it, when she sees another food she's interested in tasting or

wants a drink.

Zach has started to really notice that she's not as interested in

eating as he is and it really upsets him. He cried in the most heart

wrenching, heart broken way tonight when she wouldn't accept a cookie

he was offering her.

We have stopped giving them Periactin. It had a negative effect on

their mood and we couldn't see enough (if any) effect on their

appetite. just doesn't have the feeding skills to deal with

hunger anyway, if that makes sense.

Our stress level has plummeted by 50% now that we have one child who

is will ng to eat a little. We dream of the day when we can

commiserate with other parents " Ya, my child is a terrible eater " as

opposed to " No, you don't understand, my child doesn't eat AT ALL! " .

Mitzi and Mark

and Zachary (25 months, triple surgery done in August 2002)

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