Monday, July 20, 2020

Week 361: Video killed the radio star

On Friday, we had Lemon's first video visit with the CF clinic. And, I have to say, once you've tried telemedicine, there's no going back. No more being stuck in an exam room at the hospital for 2.5 hours for us! We were in the comfort of our own home, Lemon could run around and do what he wanted, and come in to say hi to his various providers as needed. Everyone was thrilled with his growth, he is now over 4 feet tall and over 60lb in weight. Amazing. So amazing, in fact, that maybe for the first time in his life we are making a conscious decision to back off on his tube feeds a bit to give him more room to eat and drink his calories. We're going to stick with 4 cartons of formula, but stop adding in the bonus 10 scoops of Duocal, knowing we could always add them back in during the winter if we have to. But he sure doesn't need them at the moment. 

We will have to go in to the clinic at some point in the next week or two to get his labs drawn and a throat culture done, but other than that it sounds like it will be all virtual all the time for the foreseeable future. The doctor things from now on, even in a post-COVID world, CF medicine will switch to being 2 or 3 virtual visits per year, with only 1 or 2 in person. Which makes tremendous sense given all the infection risks CF patients face every time they go to clinic. Almost causes one to ask why it took a global pandemic for this switch to become possible. But anyhow. One interesting little tidbit that we learned from his doctor: they have not had a CF kid hospitalized for an exacerbation since the pandemic began. So, that's one little positive side effect of all this social distancing we've all been doing.

Speaking of all virtual all the time, our school district just announced that the start of the school year will also be all virtual. So, that has simplified our decision making process about what to do about school in the fall, and we will just join the throngs of parents nationwide who are scrambling to put together some kind of learning situation for their kids. We've joined forces with a couple of other families in the neighborhood to try and make a go of this. How exactly all this will work is anyone's guess, but I'm sure something will happen. I'm a little sad that Lime will miss out on starting kindergarten at the school. On the other hand, though, is Lime a little sad that he won't be starting kindergarten at the school? Not in the slightest. Is Lemon sad not to be going back? Nope. So, I feel very lucky in those respects and will try to take the lead from their positive attitude. 

Other than those little developments, quarantine summer continues apace. Lots of playing around the house, coloring, standing on one's head (Lemon's particular favorite), spraying things with the hose, and so on and so forth. Lime has definitely caught the gardening bug, and we begin every morning with an inspection of our plants and the harvesting of whatever is ready to be harvested. Lemon has astounded me by eating pole beans from the garden, and even tasting a beet! I'm still working on them with the home-made bread and pasta, though.