Monday, January 18, 2010

Pity Party

I feel like crying. We see L's gastroenterologist tomorrow and so it's like all our troubles are in bold face tonight as I think about what to talk about with her tomorrow. He doesn't eat! Anything! Ever! It's so frustrating. Former favorite foods, we beg him to take just a couple bites. It's this grand ordeal, we have to ask him constantly "What's your next bite gonna be?"; we will feed him ourselves (he is four-and-a-half for goodness sake), this morning I was sticking blobs of scrambled eggs in his mouth with my fingers, we routinely stick a banana in his mouth. This is absurd! But if I were to put an Eggo waffle on his plate, he'd probably eat the whole thing. He loves bread products but he's allergic to wheat and when I buy the wheat-free equivalent he thinks it tastes funny. Out of desperation, we just let him eat whatever he wanted for about a week, including wheat products, but then he said his tummy hurt and we're like oops, so we stopped.

As a refresher, L doesn't get hives or other histamine allergic reactions. Instead, with the EE, his white blood cells attack his esophagus causing irritation and bleeding. But it's been so long since his poop has tested positive for blood, we're (that's us and his doctors) wondering if he's either outgrown his allergies or even the underlying condition--which is why we were willing to let him eat wheat for a week.

So once he said his tummy hurt, we stopped all wheat and made a hemoccult card of his poop. (We have three poop cards to take to the GI tomorrow, though none are an official food trial--because he will not eat any of the new foods we want him to try.)

So I'm frustrated that L isn't eating. First, there's the calorie issue. If he drinks all of his bottles, which he typically does, he is 250 calories shy of what he needs to maintain his weight. 250 calories--that's not much, yet I doubt most days he's reaching that. Second, we all want to be expanding his diet and that means food trials. To do a food trial, we have him eat a new food every day for at least a week, then test his poop on a hemoccult/guaiac card. So if he won't try anything new, we can't do a food trial. In the past, we've gone down the list (from the allergist) of the next food he's supposed to try. If he wouldn't eat it plain, we'd puree it and hide it in one of his baby foods. Gross, but it worked. Well, he's too old and smart for that now. So what I've been doing is when he is willing to try a new food (as happened with mandarin oranges last summer), I turn that into a trial--mandarin oranges for a week, then test his poop. Now hubby and I are constantly putting anything and everything on his plate hoping something will click and he'll try it, like it, and we can do a trial. But one night he'll be willing to try a pinto bean, and the niext night he won't touch it. It's been going on like this for months. We have the most success with fruits, but right now we are desperate to find proteins he'll eat, because without proteins, he will never get off the formula.

We tried feeding therapy this fall and it was a financial/insurance disaster that I won't detail here. Long story short, we only got 3 sessions (that we'll be paying off for the next century). She helped us getting L sipping his Neocate (that's another long story for another day)--we're hoping to build on that toward getting him off the bottle, but we see now that will be a very long road. But she didn't have enough time to "break him" (her words) so he'd be willing to try more foods. So we're nowhere on that, though we'd like to find another feeding therapist that's cheaper, but we know from looking into this before that few feeding therapists do what we need.

So that's where we are and what I'm thinking about tonight.

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