Week 347: April snow

The good news is that we have all stayed healthy since the whatever-it-was that sickened Papa Bear and Lemon last week. So, after a few further days of isolation to be sure that we were all on the up-and-up, we have resumed our "usual" life of juggling work, home school, and life in general in this new version of reality.













We finished up Lemon's azithromycin test and he never got a rash, even when we went up to the full-strength dose. So, it seems like now he is tolerating it (or, that the doctor was right and the rash was completely unrelated, although I find that hard to believe). Of course, his seasonal allergies had just started acting up right when we started the azithromycin test, so at more or less the same time we started Zyrtec, which may have helped, who knows. In any case, if we can keep him on azithromycin to control the inflammation in his lungs, it's a win.









One little advantage of being home all the time is that Lemon is actually eating a lot more. Of course, it's in the least convenient possible fashion, being 3 bites of about 17 separately served snacks/meals throughout the day. But, in addition to being a lot of mess, it's a lot of bites. In fact, his weight is up to 55lb, which is the heaviest he has ever been in his life. He's so chubby looking that I am thinking about lowering the amount of calories in the night feed so that he will get more of his calories from eating during the day. Wild. But, in these strange and troubling times, we'll take any ray of sunshine we can get.

I hope that one other positive change that may come out of all this is that doing regular CF clinic visits via telehealth will become a regular thing. They were never offered to us as an option before, but our next visit is already scheduled that way. I certainly appreciate that in person visits are important too, but even if we just did every second visit as a telehealth visit (assuming things were going well), that would be a huge improvement, both in terms of minimizing disruption to our lives and minimizing the risk of exposing Lemon to germs every time we walk into the hospital. I for one would be very happy to only be in that lobby every 6 months instead of every 3.

I think that is about all the news from our little family at the moment. I feel very fortunate that we have so little to report right now. It is hard for me to imagine what the future looks like, even what things will be like in 2 months, or in a year. But, it's a great comfort to me that whatever that future is, I will be sharing it with all of you here, one week at a time.