Monday, November 29, 2010
We're splitting the second topic into two parts. The swallow study will be first, the G.I. appointment will be next.
On our last OT appointment in San Diego (yes, we have two OTs - but the Bakersfield OT has graduated her - the SD OT is more for eating) they recommended that Karsie do a swallow study. She just hasn't been eating at all and she spits pretty much everything out that she is given. It was very concerning to the OT that Karsie has been retching after many of her feedings. She thought that Karsie could develop an oral aversion by associating food with the uncomfort of the retch. So we went in.
Good news! Her not swallowing is not mechanical, it's a defense. Michelle and Carlos went in to the study and they had Karsie eat a bunch of barium-dipped food...yummy! Then they took a video X-ray and watched Karsie swallow. Karsie does block the swallow with her tongue at first and is very tentative about letting food get by. But she does swallow. In fact, she swallows more than we thought, it's just hard to see when all we see is the food coming back out. They ruled that she didn't have any problems, so that means that our next job is to create positive associations with the eating. We are continually told, it's not about how much she eats right now, it's just getting her to be happy with food and enjoy the sensations. The amount will come. So, we have been on that journey, and it's actually starting to show progress.
Lately, Karsie has been signing "more" for when she wants food. She absolutely loves putting food into her mouth, and we're noticing that she is swallowing a lot more. We think that has to do with us decreasing her total volume of formula and giving it to her more frequently instead of all at once. She has not retched nearly as much, and she is more willing to eat. We really think that she would do a decent job of eating if she were to be taken off formula and get hungry, but we wouldn't be able to hydrate her yet because she doesn't have the same skill at drinking.