I knew this wasn't going to be our greatest clinic visit ever, but even so, getting our numbers was a bit disheartening. We went into September with Lemon at the 95th percentile for BMI. As of last week, he'd lost a total of 6 pounds, and also grown taller. We have done this math in previous winters but I don't think the result has ever been so striking. He has fallen all the way down to the 43rd percentile for BMI (when the goal is always to stay above 50th). A lot of hard work, all torched in 3 months.The "good" news, though, is as follows. First, his height velocity is undiminished, so even though he's lost a lot of weight, he has still had enough nutrition/reserves to keep growing upward. Second, his lung function (however reliable pulmonary function tests are in kindergarteners) is unchanged and at 100% of expected for his size. Third, we know what we need to do and we have the tools to do it (more calories in, through the tube). Fourth, as our nurse-practitioner pointed out, the fact that we had those reserves on board probably saved us from a hospital admission and IV antibiotics. So, it's not all grim news.
We're following up with another visit in 2 months to see if going back up to 3.5 cartons of formula per night from the 2.5 we had switched to is enough to get things moving in the right direction again. I suspect it will be, as long as we can actually do it every night. Luckily, winter vacation starts on Friday so that should really cut down on the number of viruses that Lemon is exposed to, and also should increase the opportunities he has to eat. I can't say that I'm shocked that he doesn't eat much lunch, given that the school lunch period is 15 minutes. But, if he's at home and can graze on home-made holiday treats all day long for two weeks, we may get somewhere.
We also found out that it was time for everyone's favorite part of the clinical study that Lemon is participating in: stool sample collection. Even better--they wanted another sample from the non-CF sibling. This is the first time that I've had to collect samples from two toilet trained individuals, who, I might add, are at peak scatological humor. It make take our household several weeks to recover from the hilarity of scientists asking me to place a plastic "hat" in our toilet to catch the precious specimens, followed by the process of scooping the right amount of the goods into a little vial and putting the vial in a bag, the bag in the container, the containers in the mailing envelope and, of course, the biggest question, "Will the mailman know it's poop?"
That excitement behind us, I also signed Lemon up to participate in two more tests for the study, a multiple breath washout test and a chest CT. I'm always glad to participate in whatever research we can, because this is the way forward for the whole CF community. For these tests, though, I'm also really curious about the results. These are tests we wouldn't normally have access to as part of routine care, but I hope they will give us a more complete picture than we've had before of what's going on in Lemon's lungs. That is, if I can convince him to lie still for 20 minutes in a CT scanner. Wish me luck!
