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Friday, June 24, 2011

Tube weaned, Maybe?!

Katy began to eat by mouth a little over a year ago. She has had a little trouble keeping her weight up during the winter because she just does not digest when she is sick and she is sick a bunch in the winter. She required supplemental tube feedings during the winter, but never backed off on eating much. We started her on a new med about a month ago. The med is an antihistamine that has the side effect of increasing appetite. We had tried it a few years back, with no results. This time it worked. She picked up her eating by about 20% and is now gaining weight again without supplemental tube feedings. Either way it is the same food(we use real food in her tube, not formula), but now she is choosing to eat it. She is still on mostly pureed foods, but she is doing okay with a little texture now. I have pureed spaghetti meat sauce and cut the noodles into small pieces and she didn't gag. She also tolerated food with rice in it the other day without gagging. I am so proud of her, she is a trooper. After 6 years of tube feeding she just decided that she was gonna eat no matter what. She seems to make the most progress when we just step back and relax and let her decide to do it. It seems that every time I stress out over something and push her in therapy it just doesn't happen until I back off. When I back off and take her lead she does it. It was the same with butt scooting, walking, playing on the play ground, eating and using pictures and sign language to communicate. Next step potty training.

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