Monday, January 14, 2019

Week 282: Fruit Bats

How do you figure out the date? I was trying to figure out which day in January it was yesterday, and my thought process yesterday went, "Well, we're finishing 14 days of Cayston tomorrow, and we started on New Year's Day, so that means today must be the 13th." And, yes, I realize I could have looked at my watch or my phone, but that takes all the sport out of it. Plus, some key date-determining mental pathways in my brain were established in the pre-cellphone era, so my first instinct is always still to work it out rather than to look at some electronic thingie that will tell me. Anyhow, just the small and random ways in which CF works itself into every aspect of your life.

















I had to go to the school at mid-day this week to administer Cayston at the end of recess. When I showed up on Tuesday, the nurse's assistant recognized me and said "Oh, you're the really efficient mom! I haven't seen you yet this year." I was flattered  that she  remembered me, and somewhat disheartened to think that she felt that the fact that she had not seen me until the SECOND day of school after winter break constituted a major absence. I do try to be efficient when I have to do meds during the school day, so I guess I'm glad that's what she remembers me for.

In any case, yes, we finished our 14 days of Cayston today. We debated the idea of stopping at 10 days, but Lemon still had a trace of a cough, and we wanted to be as sure as possible that we'd beaten this thing back, so we did the 4 additional days. We'll see how things go over the coming week but I'm pretty confident that we're good. Weight-wise, we've clawed our way back up to the weight that got us in trouble at our most recent clinic visit. We have about 4 weeks until our next clinic visit, so hopefully we can put on a bit more by then. We're doing our best. Especially since at a recent play date, Lemon and his buddy displayed such enthusiasm for the fruit I put out as a snack that the buddy's mom referred to them as "fruit bats." Let's just say that his tastes continue to run towards lighter fare. Even lighter, if possible. He's transitioned from snap peas to watermelon. I guess strictly speaking he did eat a bite of frosting at the birthday party we went to yesterday, in addition to the strawberries.

Tomorrow I am taking Lime to participate in a study of child development at the university. Probably the last thing I need in my life is extra appointments, but I feel like I want to contribute to whatever research I can. I feel so indebted to the parents of kids with CF who came before me and paved the way for all the treatments that Lemon has access to. I feel like one of the best things I can do is pay it forward in whatever way I can, for whatever disease or indication I can, to make things better for anyone who comes after us. So, this study has nothing whatsoever to do with CF, but with autism, an issue that doesn't affect our family but does affect so many people that we know. Hopefully Lime's participation will help the cause in some small way.