The other day, I talked to a good friend who I hadn't chatted with in a while. She asked me how Addy was doing. She was there for a lot of the worst of last year when we were in Washington-- the back-to-back hospitalizations, acidosis episodes, and increasingly restrictive diet for a kid who loved food so much. But thanks be to God, Addy has come such a long way since then, and this picture kind of says it all...
That is Addy (with her BFF Rosie). Doing so great. Eating a waffle. With whipped cream. Two foods we would have never considered giving her in the past because she couldn't tolerate them. And now, magically-- or miraculously-- she can eat them with no problem at all. She can also eat scones and blueberry bagels and cucumbers and carrots and apples and pickles and pepperoni and roast beef and bacon and rice and eggs and of course her hamburgers too. When she sees me try something new, she says "I want to try that too." And I say, "Sure, here you go..." unless it's a piece of cake or something with explicitly high concentrations of sugar because I'm not brave enough to go there yet. But for most everything else, she can eat it all without worrying about awful diaper blowout catastrophes (which used to happen 6-8 times per day) because she goes on the potty now, and only does it once or twice a day. This is kind of amazing for a two-and-a-half yr old with Short Bowel Syndrome whose intestinal length is only 10-15% of a normal-sized intestine.
She also hasn't had any d-lactic acidosis episodes or needed any gut antibiotics since we stopped formula tube feeds back in January. She has been gaining weight and growing well and doing so wonderfully that I don't think anyone could pay me a billion dollars to tube-feed her formula ever again, not right now at least. We supplement her caloric needs overnight with a bolus of baby food puree (ususally Earth's Best Corn & Butternut Squash) mixed with unsweetened So Delicious coconut milk through her AMT Mini One button, but the rest she eats by mouth during the day, and she eats whatever she wants. For a foodie mom with a food-loving kid, the past two months have been a dream come true.
So we've been taking advantage-- going to the market and restaurants and having picnics in the park and exploring upstate New York and making sure the girls are doing some sort of fun activity every day of the week. Rosie's in preschool ballet and music classes, and they're both doing toddler sports and kindermusik classes together. Anthony asks me sometimes if I'm overexerting myself or overstimulating the kids by taking them out every day, but I remind him that we're just making up for a whole lot of lost time... and borrowing a little extra for an uncertain tomorrow too.
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| The "Amazing Things" marketing logo for NewYork-Presbyterian Hospital, where Addy goes to see her amazing gastroenterologist and nutritionist who totally changed our lives and gave us back our bright, happy, silly baby girl. |
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