She's Doing It!!!

Rachel has been attending "feeding camp" for almost 2 weeks now, and she is eating! They began the program last week with pureed foods - just like you would serve to a baby who is learning to eat. While she resisted all baby foods at home, she is agreeable to whatever they serve her at camp. She has eaten 13 different pureed foods without any struggle (including broccoli & cheese, egg & cheese, spaghetti with sauce, and turkey with gravy!) Now they are mixing in some mashed foods during her feeding sessions while they continue to introduce more pureed foods. She is accepting the mashed foods as well, and is starting to use her tongue properly. Maybe we will get her off the feeding tube someday after all!

This program is pretty rigorous. She is at "camp" from 9 until 4:30 Monday through Friday for a 4 week session. She eats 4 times a day, with the same therapist feeding her every time. Every aspect of the feeding is structured; it is the same every time she eats - body positioning, verbal prompts, spoon, toys, expectations. Her feeding therapist Brittney begins with the rules - she must open and accept the food on the spoon every time it is presented to her with the prompt "Open". Then Brittney feeds her 2-3 ounces of food and 2 ounces of her formula. And she eats every drop! She still has trouble sometimes with gagging and vomiting - but those instances are becoming less common since she is using her tongue more appropriately. Part of her issue is that she does not know how to use her tongue to move the food around inside her mouth to swallow it. She gags because the lump of food just sits at the back of her throat.

I think the team working with Rachel is surprised by her progress. The doctor who runs the program commented to me yesterday that, before Rachel began the in-patient program, she didn't know what she was going to do with her. We all know how Rachel can try to talk her way out of any situation. Thankfully she was born a fighter - and beat the odds 3 1/2 years ago. But that strong will did not prove helpful at home when I was trying to get her to eat and she did not want to!

I had been postponing this type of program since Rachel was very little. But there is no doubt in my mind that the time is right and the program is right and Rachel will be eating meals by the time we leave here in a few weeks. If they are of the mashed and pureed variety, well - that we can handle!