Tuesday was Judith’s latest follow-up with her GI doctor at CHOP. The appointment itself went well, and we’re certainly still pleased with her new team. I, however, am frustrated, because Judith lost weight again. Her height increased, which means even more havoc on her BMI, which is now officially off the charts. Ugh.

We’re making some changes, and are still waiting for some of her test results to come back so we can see if there is anything else underlying that’s contributing to the issues. But the results that have come back so far are normal, so that’s a plus.

We’re going to start her on Pediasure 1.5 so we can try to get more calories into her system. Up until now, we’ve used the regular Pediasure, so she’s going to have to adjust to only getting vanilla flavor (right now, she only drinks the chocolate). I need to take her to her PCP in about a month for a weight check, and if she’s still not gaining weight adequately, we’re going to try an appetite stimulant. And if that doesn’t help, then we’ll be looking at g-tube placement.

I’m baffled, and I’m being harder on myself than I probably should be about this. Poor weight gain is nothing new for this child; it’s been this way since day 1, literally, and you’d think we’d be used to it by now. I think it’s the not knowing what’s causing this that’s triggering a lot of anxiety over the situation. Judith’s GI did say that Judith will likely need even more calories than what they typically aim for for a person with CF because she’s so active. It makes sense that Judith is burning through even more calories, because it’s rare that this kid sits still for any length of time! We’re still trying to work out the exact number to aim for, but it’s likely going to be really, really high. How I’m going to manage to cram that many calories into a kid who doesn’t like to eat much of anything is a mystery.