As Jenna’s liver doctor watched her chowing down on pistachios last week at our quarterly visit to get Jenna’s feeding tube changed, he said, “Let’s try it without the tube.” Wooooooo-Hoooooo! “I feel like jumping up and down,” my husband said, basically reading my mind. We high-fived instead.
This is a trial. It’s a good time to try because she’s been stable and she’s not on a strict medication schedule. So if she keeps gaining weight, we can keep it out. If she loses weight, it goes back in.
Then there’s the challenge of getting her to take all of her medications orally. Occasionally in the past she has voluntarily taken one or two by mouth, but most of them we’ve put right into the tube. Easy-peasy.
At first we were bribing Jenna to take her medicine with M&Ms. Not a healthy habit, but it worked, most of the time. Jenna’s feeding therapist recommended a reward system, a prize bag with little dollar store stuff (bubbles, markers, necklaces, etc.), and a week into this new adventure, the prize bag is actually working really well. “Prize! Prize!” Jenna will shout, and now even asks to take her medicine. Progress is good!
Two years and 8-1/2 months later, no feeding tube! We’re so proud of the progress our girl has made!!