We have made it through another month of in-person school! As I expected as of last writing, Lime tested negative for COVID, phew. Aside from those few missed days, both kids have been there the entire time. I feel like we are finally settling in to a routine with going to school and work every day. A slightly chaotic routine, don't get me wrong, but a routine nonetheless.  The kids both got their flu shots last week, so now we just begin what is hopefully the final wait until they can get vaccinated for COVID and we can all breathe a sigh of relief and let up on the levels of general par ..read more

 This week, we have had the opportunity to experience one of the great dilemmas of in-person school during the time of COVID. On Friday, Lime came home with a slightly stuffy nose. By Saturday morning it was clear that he had a cold, or something that was presenting like a cold. There had been a few cases of COVID reported at the school during the week prior, none in either of the kids' classes, but still enough to be fresh in our minds. Luckily, we had a rapid antigen test on hand at home, so over much protestation I swabbed Lime's nose and conducted the test. For those who haven't used ..read more

 Despite cancelling all of our summer travel plans, we managed to pack quite a bit of action into the last month of the summer. Lemon spent the mornings at a sports camp, which he said that he hated. Of course, every morning that I dropped him off there, he left me half-way down the path to the field to run and join the other boys. He learned a tremendous amount there in spite of himself--how to kick and throw a ball, how to have fun outdoors with other kids, how to just play a game for the fun of it without having there be a winner and a loser. So, I was really glad he did it, and hope t ..read more

 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 11 ..read more

 After years of waiting, we finally have Trikafta in hand. After all that time, and given how expensive the drug is, I had expected the last step to be more of a hurdle, but instead it was totally seamless. Our doctor wrote the prescription, I signed some paperwork to enroll in Vertex's patient support program, they contacted me and found out what specialty pharmacy we wanted to use, and bam. A couple of days later the medicine showed up. Lemon has been a champ about taking it so far. The main challenge is that it has to be taken with some kind of fat-containing food. At night, it's no pr ..read more

 Amazingly, we have arrived at the last week of the school year. In just a few days, we will be done with K and 2, and on to 1 and 3. We went to the shoe store earlier this month as a very exciting family field trip (yes, COVID has adjusted our standards of what counts as an exciting family field trip) and I could not believe how big the kids' feet are now. Of course, they barely wore the shoes we got them in the fall since they have hardly left our property since that time, but that is a separate issue. In another week, they will be off to day camp every morning, which may be a bit of a ..read more

This month, I took both kids for their first visit to the pediatrician since the before-times. Both are doing well, almost as though being home all the time and constantly grazing on tempting snacks has had some salutary effects. I am pleased to say that after scraping by at around the 10th percentile for most of his life, Lime has shot up to the 50th percentile. Lemon is still in around the 70th percentile for height and weight, which is great and will hopefully put him in a good position for (fingers crossed!) returning to school in the fall. The major development for April is that I have ma ..read more

Welcome to spring, at last! I wasn't entirely convinced that we would make it through the winter, but we do seem to have come out the other side. Even here in Wisconsin, the bulbs are pushing up their first leaves, and we're having fun roaming around the garden determining which plants survived the winter.  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 appointm ..read more

 February has been an exiting month all the way around. Weather-wise, we had a couple of weeks of real deep-freeze, when we essentially did not leave the house for two weeks, making the cabin fever of the pandemic that much more intense. Thankfully that stretch of weather is behind us now, and we are actually having a much-needed midwinter thaw at the moment. Of course it is still just March and this is Wisconsin, so no doubt there will be another wintery stretch yet, but these warmer temperatures do give hope that we've almost made it through. There are some major changes in the works wi ..read more

 Hello everyone, and welcome to the new monthly blog format! I hope the start of 2021 has been good to you. We are making our way through the Wisconsin winter here, aided by lots of snow and baked treats. Our school district has remained 100% virtual, so our learning pod is continuing to run. The thrill of online school has definitely worn off for the kids, but they're doing their best under the circumstances and are still learning a lot of new things. Still, I can sense their eagerness to be back in the real world again.  Of course we are very excited and eager for vaccines to becom ..read more