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Friday, May 20, 2011


Once a week, we have Speech Therapy, which primarily focuses on feeding. Or tasting. Or just plain accepting the spoon.

Miss Charlotte Amalie has never "eaten" by mouth. The most our little gal has ever eaten in a sitting is about 1.5 ounces of milk from a bottle. And yet, day in, and day out, we sit down with her, three times a day, to show her just how fun it can be to eat.

We play with food (put it on her tray and let her explore), and we taste food (tiny, tiny, TINY amounts on a spoon). We try boluses of food, we try scant amounts of food. We've tried holding her feeds, we've tried changing her calories.

Charlotte's response is making me worried about her when she becomes a teenager. "Meh." She's already apathetic.

I know, I know, she won't always be on the tube. And the reality is that she's come a LONG way in the past six months. Six months ago, she would gag and retch and turn blue at the mere sight of the spoon. Or when you opened food near her. Or if she could smell it, or see it. Or if she just didn't like you. (Not really, at least, that's what I'm telling myself).

Now she will reach for the spoon and put it in her mouth. As long as there isn't any food on it.

The really irritating part is the regression. Charlotte was a sickie-head (I hand out with a three year old too much) last week, with a simple GI bug. She weathered the illness remarkably well, despite her high temp and constant retching. (At one point she puked through her nose. I'm no doctor, but I'm fairly certain that with a Jtube AND a nissen, that is just not supposed to happen). Prior to her illness, she was allowing foods in her mouth without gagging. She wasn't swallowing them, but that's an entirely different battle.

This week? Nada. Gagging and retching again with the "introduction of food into the oral cavity," as per her therapy notes. It's just a nasty cycle. She has a negative experience with eating, so she gags to protect herself. Gagging and retching cause a negative experience, so she's more likely to gag the next time food is introduced.

I'm exhausted by it. I'm frustrated that four tastes of baby food is "remarkable progress" for little Miss Charlotte Amalie. I'm frustrated that we've got years of this darn GJ-tube in our future. I'm frustrated that we've bypassed bottles and sippy cups. (I don't know why, those things are a pain to clean. But I miss them none the less).

I'm frustrated that I have to accommodate her tube. Can she wear this outfit? How do we bathe her? Can she sit on the beach? How does the hole in her abdominal wall affect her core strength? How much tummy time can she do before her stomach contents leak out? (Gross, I know. It's actually one of the least gross things that goes on in our house... disturbing.)

I'm frustrated that I have to love it. I have to love this darn tube because it keeps her alive. Thriving. Plenty chubby, let me tell you. I frustrated by the power it has over our lives. By the unyielding influence it exerts.

I'm mostly frustrated by the fact that the less CA eats, the more Oreos I seem to consume.

Just sayin'


  1. Phew. So glad it's not just me. The harder Daphne resists eating, the more I eat. It is nice that at least Charlotte is chubby. D is pint-sized. Not even a pint.

  2. I feel ya sister!!! Don't they know what eating is fun?