Many things have occurred to get us to where we are now:
1) Evanna's spinal cord detethering surgery resulted in an increased ability in swallowing and interest in eating.
2) Evanna passed her most recent swallow study for all thicknesses. She's supposed to limit thin liquids to small amounts while she practices, so we finally got a prescription for thickener so we can work on drinking more.
3) Her dietician suggested I considered getting her evaluated for their intensive feeding program, which is three meals a day, five days a week, for two weeks at Children's hospital. Given our commute, we would have to stay up there in a hotel for two weeks. Between that, her medical anxiety, and her tendency to refuse to eat if you try to encourage her to eat, we don't think it would be the right option at this time.
4) Given the above, I spoke to her pediatrician about attempting to wean her from the tube on my own. I've done quite a bit of research (and even found details on how Children's does their program) and feel confident that I can tackle it on my own, though I want to do it more gently. He didn't feel qualified to advise me on how to wean, but I assured him that I didn't need to know how, only his support because weight loss is an expected side effect of the weaning process. So I got a number from him on how much she can safely lose in the process.
5) Our OT found out I was going to be working on weaning without a feeding therapist and offered to help with the process. In two 5-10 minute chunks of time, she accomplished more than hours of feeding therapy. Because of her, we've been able to successfully push her gag reflex back, brush her teeth with her cooperation, take bites on her left side, and take bigger bites more consistently.
Given all that, we've seen her eat nearly half of her calories orally a few times. It's not healthy calories but you don't worry to much about healthy when weaning. Yesterday, for example, she ate half of a toaster waffle with syrup, an entire string cheese stick, half a bag of peanut butter M&Ms, 10 French fries, some Mac and Cheese, and some corn. Today she ate part of a string cheese stick during OT before going to town on Costco pizza and fruit smoothie. Then she ate an entire 32 pieces serving of M&Ms. She ate some mashed potatoes and corn on the cob later at dinner.
