Week 226: Stretch and toss

On the week of a clinic visit, I always try to put together in my mind what has happened in the 3 months since we were last seen, and try to figure out what parts of our plan need to be optimized going forward. I needn't remind most of you that the past 3 months have been a fairly unrelenting series of respiratory infections of various types and degrees of severity. Still, I feel like in spite of all that, our respiratory plan is working. We have fought off all but two of those things without any antibiotics at all, and the two times that we felt like we did need to use an antibiotic, we had Cayston on hand, deployed it, and beat things back to baseline. We've just finished a week on Cayston now and Lemon is back to respiratory baseline already, so I'm pretty sure we can stop after 2 weeks, or maybe after 10 days if our care team agrees.





If I have learned anything over 4.5 years of being a CF mama, it's that if it's not respiratory, it's nutrition. That is indeed the case now--Lemon is currently lighter than he was in June, and also taller--I'll be curious to see by how much, but I can see his ankles sticking out of the new pants I bought him for school this fall. When weight goes down and height goes up, BMI goes in the toilet, and I can see it written all over his body, every rib, every vertebra, every muscle in his back clearly visible. He's not unhealthily skinny (yet, I think), but he is definitely very thin. Thin would be OK if I didn't have this suspicion that our reserves would be called upon many more time this winter, and we don't have any right now.





















So, what am I hoping to get out of this clinic visit? Well, we will get a lot of data. It's our big annual recheck of everything, which means not just the regular two-hour song and dance, but also pulmonary function tests, chest x-ray, and a blood draw. I am curious to see how Lemon's lungs are doing in light of all they've been through so far this winter, although I doubt either the PFTs or the x-rays will tell us much, because Lemon isn't reliable enough at doing the PFTs yet for the data to be really valid, and an x-ray is not exactly a highly sensitive measure of how lungs are doing. I will also be very curious to see how his liver numbers are after 3 months on ursodiol--hopefully it's working and his numbers will be within the normal range, or at least closer to it. We'll also get a vitamin D level to see if he's taking enough vitamins, and some iron measures to see if the amount we're supplementing is the right amount

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I'm also hoping to continue to get some new ideas from our nutritionist on how to add calories to Lemon's formula so we can get some weight back on him. I've given up all short-term hope of Lemon actually eating enough calories to have any kind of impact on his weight. With his BMI continuing to drop, I basically just want to ram as many calories as is feasible through the tube to get some weight on him over the next couple of weeks, when he'll be home from school and away from the 18 pathogen-carrying monsters (ahem, I mean his friends) in his class. We're continuing with food school for now. I had thought about pulling the plug after today's session, because Lemon had really started to resist going. I mentioned that to his therapist, and she said that she wasn't at all surprised, that she's been pushing his abilities by offering increasingly challenging foods. And Lemon being Lemon, he doesn't want to do things he's not good at so he'd rather just not go. She still thinks he's making progress, so we'll keep at it for a while longer and see where we can get.

Assuming we survive the clinic visit, we're all looking forward to the upcoming holidays. This is the first year Lemon has been old enough to really anticipate the holidays (well, mainly all his presents). Lime still doesn't quite get the idea of presents yet, but he loves all the lights and decorations. And he still can't quite say the "k" sound (usually substituting "t"), so his pronunciation of "Christmas" cracks me up every time. Don't worry, I'm still a committed Scrooge at heart, but I do appreciate seeing the magic of the holiday season through the kids eyes.