I've always felt that with CF, we swing back and forth between focusing on pulmonary symptoms and focusing on nutrition. When Lemon was really young, those cycles were quick, almost dizzying. Now that he's older, the cycles have lengthened out. Sometimes, they get so long that we forget that we're even cycling. But, we still are.
Since we tried Cayston, I've gradually allowed myself to hope that we finally have a non-IV intervention plan that actually works. We're nearly done with our second 28-day cycle (thank heavens!), and Lemon is at respiratory baseline, no cough, full of energy. With spring around the corner, I am growing increasingly optimistic that we will make it through winter without another hospitalization. We know now to anticipate the spring allergies and not get spooked by them. We've got our air purifier and Zyrtec and Flonase ready to go.
In December, we really thought we had nutrition figured out. Lemon had hit 36lb. He was at 80th percentile for BMI. His blood levels of various vitamins and fats were in great shape. So, we started coasting. And I should have known better, because I know too well what happens when you start coasting with CF. It catches up with you. Guess how much Lemon weighs now, 3 months after that amazing weigh-in in December: 36lb; no net weight gain in 3 months. He lost a bunch when he was sick, then gained it back quickly, and that's about it. I'm quite sure he's gotten taller over the last couple of months, since his ankles seem to be sticking out of every pair of pants he owns. Taller but not heavier means BMI going down, and we can see it--there are lot more visible bones and muscles than there used to be. So, at our clinic visit next week (how can it be that 3 months have already gone by since our last visit?), we'll have to retool our nutrition plan again.
The other thing I've been wondering about a little bit is whether it is time to reconsider the idea of some kind of eating therapy for Lemon, because he is still soooo resistant to eating. We offer but don't push, we encourage, we praise, we present choices...and nothing. Tonight's dinner was about 15 minutes of drama for 2 bites consumed. Aside from a few bites of graham cracker or whatever at school snack, that was it by mouth for the day--and we would consider today a good day because he did eat a few bites of dinner. I feel like developmentally he's light-years ahead of where he was the last time we tried eating therapy, so maybe it's time to try again. With school letting out for the summer, maybe it would be a good time to focus on something different.
Just to keep things interesting, Lime has developed into an expert climber--a skill that Lemon never really honed to this degree. Lime will drag any kind of chair or stool around to his desired point of embarkation, climb on it, and head for the stars. Or the top of the dining room table. Or the kitchen counter. Or the top of his changing table. Or any other nearby surface that might hold something of interest, particularly something edible. He is also still waking up really, really early. This despite the fact that every night, as I put him in his crib, I say, "Good night, see you in the morning, not too early!" At this point I'm actually looking forward to the clocks springing forward. Assuming he stays anchored and the clock shifts around him, I can look forward to sleeping in until 5:30 sometime soon!
Oh, yeah, and happy birthday to Papa Bear--I guess that was this week, huh? ;-)
Since we tried Cayston, I've gradually allowed myself to hope that we finally have a non-IV intervention plan that actually works. We're nearly done with our second 28-day cycle (thank heavens!), and Lemon is at respiratory baseline, no cough, full of energy. With spring around the corner, I am growing increasingly optimistic that we will make it through winter without another hospitalization. We know now to anticipate the spring allergies and not get spooked by them. We've got our air purifier and Zyrtec and Flonase ready to go.
