Abby

Abby hasn't done very well on her new formula. This week, I spoke with the nutritionist about my concerns. She has had belly pain, swelling, not sleeping, and the ever present nausea. I could also tell she's losing weight. They asked me to bring her in to figure it out.

Yesterday she was in neuro for her EMG, which basically showed she has neuropathy in her legs. I wouldn't have expected her to have normal nerve impulses because of her CP, but the Dr. thought is it was abnormal, even for a neurologically impaired child. Her muscle response to the low nerve signals was better than they thought it would be. All of that means....nothing. They don't know why it's abnormal and there's nothing to do about it.

Thankfully, neurologically, she doesn't seem to have anything else to be concerned about.

The belly isn't quite so good. When we got to the GI Doctor we realized that Abby has lost 6 pounds in the nearly 4 weeks we've been on the new formula. SO not good. I knew she was thinner, but I had no idea she'd lost that much.

We went for blood work, x-rays, and changed the formula immediately. He also ordered intermittent suction the pressure and air in her stomach. We are doing med changes and looking into the medicine the neurologist suggested. The GI Dr. said he used that medicine for years and never had a problem. He said it worked great, so we are seeing what we need to do to get it under compassionate care.

She hasn't been sleeping well either. Actually hardly at all. We are going to try a sleep medicine that also helps with motility. The GI doc is emailing Neuro, just to be sure there are no contraindications. It's very important that she not burn calories by staying awake all night.

**since starting this post last night, she has been much more comfortable on the new formula. She still didn't sleep well, but I am very thankful we made some immediate changes.

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