This week was monumental in that at long last, Lemon officially weighed in at over 40 lbs on the clinic scale (41 lbs to be precise). We'd been stuck at around 38 lbs for about 6 months, until at our last clinic visit I asked for ways to boost the calorie content of his formula--clearly the 1200 calories we were pumping into him overnight were no longer sufficient to bulk him up after the series of respiratory infections that he'd had earlier in the winter. We started adding about 150 calories worth of DuoCal (powdered, soluble calories, chemistry's best) to each overnight feed. And, voila, after 2 months of that plus not throwing up, a weight gain of almost 2.5 pounds. And, those two months happened to be January and February, which is downright crazy in that those have not been the most favorable months to have CF in Wisconsin in our past experience. Lemon is now back up to 64th percentile for BMI and has been holding steady on 70th for height. Woohoo!
The only downside of our clinic visit this time was that after our exciting weigh-in, we had to wait in our exam room for 40 minutes until the person from the pulmonary function lab came to get us for our test. This was frustrating, to say the least, given that Lemon is not particularly gifted at activities like "sit still and don't destroy everything." And, our appointment for the PFTs was at 8:00 a.m. We were there at 7:50 and in the room waiting right at 8. How they could be 40 minutes behind schedule for the first appointment of the day is sort of mysterious. By the time we eventually met with our dietician, at about 9:30, Lemon was completely wild with boredom, so it was hard for the dietician and I to have any kind of meaningful conversation. After the appointment, she sent me a message saying that the appointment seemed kind of chaotic, and was there anything I could suggest to improve things. I tried not to be snarky, but the basic message was, we had an appointment, I kept my end of it, where the heck were you guys? We had an even worse experience at our previous appointment back in December, so hopefully by the time we go back in May they will have gotten things figured out.
Lime actually had a pretty bad cold/cough this week, so much so that I kept him home from school on Thursday because he'd been up coughing all night on Wednesday night. I'm not sure there's anything more piteous than a 2 year old who is weeping and pointing at his face saying that his nose is "fluffy." In any case, it appears that this is a bug Lemon has had before, because miraculously he didn't catch it. Of course, he did catch something else, a vicious 24-hour stomach bug that struck first thing Friday morning. Luckily by Saturday morning he was pretty much back to normal operating parameters.
We had one nice bit of follow-up from the advocacy day last week: one of the state senators who received our thank-you note put it out on her social media pages. So, it seems like we really did connect with at least one person. Since the Wisconsin advocacy day was such a success, the national foundation asked if any of us wanted to join the national advocacy day in Washington D.C. this spring. Although I've kind of caught the advocacy bug now, my spring is already to crammed with other stuff to go this year. Watch this space in 2019!
