Charlotte will tell you that the most memorable part of her visit to the CHOW feeding clinic was that “Dr. Julie changed ‘Harlotte’s tubey.” That’s true. Our RN, Julie, did change Charlotte’s MICKely button since it hadn’t been changed since April.
And for Charlotte, that probably was the highlight. She cried a little, but was mostly very brave.
But what does a 2-year-old really know?
The real excitement of our visit was this: We were given the green light to go for two months with no g-tube usage. In other words, what Charlotte drinks, she drinks. If she doesn’t make a full 200 mls. at a meal, we don’t “top her off” with the tummy tube.
Given that prior to our visit Charlotte had gone for as many as 9 days without needing the tube, I went to Milwaukee ready to lobby for a trial. When the team offered it to me before I could suggest it, I was over the moon.
We’re also supposed to start offering mashed foods in addition to pureed to begin to transition her to eating regular solid food.
So, how is she doing? Since Friday she has drunk all of her “required” milk (600 mls.) and on at least one day she has drunk even more. Yesterday she got to 640 mls. She’s eating just beautifully, though I think she’s bored with her puree repertoire. Mashed foods are more of a challenge, though, because she loses focus quickly.
Sometimes it is hard to remember how far we’ve come. Here’s what I wrote on January 8, 2006:
Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she’s been refusing or gagging on her solid food, too.
I feared that she would be come 100% tube-dependent.
Two years later, I’m sincerely hopeful that we’ll be celebrating her birthday with a bandaid on the soon-to-be former stoma of her g-tube. Of course, I know she can go backwards as quickly as she has jumped ahead, but my fingers (and toes and ears) are crossed that she’ll be bikini-ready by summertime!
p.s. The other terrific highlight about our trip was that we had lunch with a friend of mine from my Discover Card days who is now working at Harley Davidson. Col, it was so great to see you!