Yummy

A couple of days ago, Roxy had her swallow study. As I suspected, she was freaked out about having food/bottles/spoons in her mouth, and gagged whenever we tried to feed her. (I doubt that lacing the formula/food with barium did any good, either, but that’s how the test works.) As a last resort, we used a syringe to squirt a bit of formula into her cheek, and she swallowed it. The good news: she swallowed appropriately without aspiration. The bad news: she doesn’t want anything to do with food or formula, bottle or spoon.

So now I have a lot more questions than answers. How do we convince Roxanne to drink from a bottle and/or eat baby food? When she does get food into her stomach, will she still have reflux, and will she aspirate it? (She didn’t swallow nearly enough during the test to cause reflux, so we don’t know.) Is it time to move her tube from her duodenum to her stomach? How do we transition from continuous feeds (20 hours/day at a slow rate) in her duodenum to bolus feeds (several ounces per feeding, several feedings per day) in her stomach without making her sick? When is it time to give up on the nasal tube and get the g-tube surgery?

I have an appointment next week with Dr. K, Roxanne’s cool pediatrician, to discuss all of the above. I’ll eventually go to see the GI doctor, but I can’t get an appointment until early May, and I’m not willing to wait that long. I’m quite sure the speech therapist/swallow specialist will be involved in figuring all this out, but I don’t know in what capacity. I suspect we’re going to have to let Roxy get hungry to motivate her to eat. Right now, she doesn’t have any association between food and hunger. Things could get ugly.

On a lighter note, I recently got to hang out with my dear friend and former college roommate, KK. She and Roxy were huge fans of each other. After Roxy went to bed, KK and I lounged on the sofa, listened to 80’s music, and reminisced. Isn’t that just the thing with old friends?