Lemon has now been on Trikafta for over a month. Last week, I took him for his one-month follow up visit for the study of the effects of Trikafta in kids. We don't get to see the results for most of the tests, like the sweat test and bloodwork, because they are done at a centralized lab and the data is blinded. But, There are some things I get to see just due to the nature of the tests themselves. So, I can report to you that after a month on the drug, Lemon gained 2.5 pounds (without any Duocal in his tube feeds!) and best-ever results on his pulmonary function tests, with an FEV1 at 115% predicted, compared to his previous best of 100%. So, that is pretty amazing. It is always hard to tell with kids whether their lung function is actually improved or whether they just got better at doing the test, but either way I will take it. And I have to say, having watched Lemon do these tests for a couple of years now, I don't feel like his skill level has changed dramatically since say last month, so I think this is a real improvement and boy is it thrilling to see. We'll have to wait and see how things look at the 3-month follow-up in September.
One minor wrinkle is that we got a letter from our insurance company saying they will no longer pay for Lemon's formula or Duocal. I am guessing the addition of Trikafta prompted them to do a chart review, and they have decided that because the formula is available over-the-counter, it does not meet their conditions for coverage. We looked around but there aren't really any deals to be had on it so we are continuing to get it from the same home-health pharmacy as before, just paying for it with our own money now, and it is not cheap. It is sort of ironic that the insurance had no problem paying for the surgery to place the G-tube, and they will still pay for the bags, extensions, and the pump to deliver the formula. Just not the formula itself, which is ironic because all the other stuff will do Lemon exactly zero good unless there is formula to actually go into him. In any case, we are fortunate to be in a position where we can absorb the cost for now, and hope that as Trikafta continues to kick in and his appetite continues to improve, we can hopefully cut back on the amount of formula we are using.
The kids are continuing to enjoy their summer camps, despite being very good at identifying even the smallest imperfections to complain about. Lemon is doing a sports camp through the end of the summer, and I am hoping that despite himself he identifies at least one sport that he enjoys participating in. For his upcoming eighth (EIGHTH!!) birthday, we bought him a new bike which he really loves. He is a big accessories guy so he now also has a lock and a bell. He is so excited about it that he even wants to ride his bike to camp tomorrow for the first time, which warms my bike-commuting heart.
It is hard to believe how much of summer has gone by already. When summer started, it seemed like it would be infinitely long, and with so many childcare complexities to be worked out. Now, it's almost gone, and it feels like the beginning of the school year is right around the corner. Who knows what that will be like. But, I feel like we have done what we can to get the kids ready for it, and this strange version of early elementary school is the only one they will ever know.
