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.
Oh, yeah, and happy birthday to Papa Bear--I guess that was this week, huh? ;-)