We have laid all the necessary medical groundwork for Lemon to being Trikafta. We did the necessary eye exam, which he passed with flying colors, and seemed pretty pleased about having the opportunity to show off his letter-recognition skills to the optometrist. After the eye appointment, we went over to the hospital to finally have blood drawn for the huge list of labs that had build up between the GI doctor and Lemon's regular CF doctor. Lemon handled himself like an absolute champ, sat as still as a statue for the phlebotomist without having to be told. The days when I had to hold him in my lap and restrain him for blood draws seem like a distant memory now. And, the blood work was all good news, liver function looks normal, vitamin levels normal, iron levels normal. So, we are in as good a position as we can be, and now we just have to wait for the FDA.
I spoke with the research coordinator at the CF center this week, and she let us know that the investigators in the hyperpolarized xenon study have decided to only let kids 9 or older participate in the second phase of the trial (ie the post-Trikafta phase). Lemon was delighted to hear this news, as he was not a fan of the MRI. He as less delighted to hear that I had eagerly agreed to enroll him in a different study that will follow his progress once he starts Trikafta. But, once I had reminded him how hilarious it would be that we would once again be sending his poop through the US Mail to help science, and that he didn't mind any of the other things he would be asked to do as part of the study, he came around pretty quickly.
Our little two-kid learning pod seems to be functioning fairly well. I think the kids, especially Lime, would love to have some more friends, but on the whole they have been handling being essentially together one on one 24/7 better than I could have hoped for. I think they are both pretty over Zoom school, but we keep reassuring them that the end of the school year is in sight. In a fit of optimism, I signed them up for a bunch of half-day summer camp programs, figuring that it would be good to gradually reintroduce them to civilized society before in-person school starts for them in the fall (fingers crossed!). I do wonder what they will make of this year of their childhood in retrospect.
