Monday, October 12, 2020

Week 373: Xenon

Just to fill you in on the exciting conclusion of the flu shot saga: everyone in my house is now vaccinated! Lemon got his shot on Wednesday at the children's hospital, and it was an amazingly smooth experience. We went at our appointed time (Lemon didn't even protest going to dramatically), we zipped in, there was no one there except us, Lemon sat like a statue and didn't even flinch when he was given the shot, and we came home. Who is this child? Then, on Sunday, I took Lime to get his. Although I am still annoyed that I had to drive across town to do it, it likewise was very smooth, very few people there, and Lime was just as stoic as Lemon was. It is almost like these children have grown up since the time that I took them both to get flu shots together a few years ago, when they both were little enough to have to get the shots in their legs and to wail like banshees for many delightful minutes afterwards.

Another exciting update is that Lemon was invited to participate in new clinical research study where his lungs will be imaged by MRI. I of course said yes immediately when it was offered to us, partly because I always say yes to research if we can possibly do it, but because I am so convinced that better lung imaging and diagnostics are absolutely critical for CF care. X-ray just doesn't cut it. The doctor who recruited us in fact himself brought up how it was Lemon's participation in a previous study (involving a chest CT) that allowed us to catch the issue in his right lung back in the before times.

The most exciting aspect of this particular research project is that it has two parts. The first part is now. And the second part is later, after Lemon starts Trikafta! As in, it is such a given that he will get it soon that this whole research study is planned around that fact! The doctor said the approval might even come through by the end of this year. YOU GUYS! THE END OF THIS YEAR!!! Ok, the year in question is 2020, so I will try not to get my hopes up too much. But, YOU GUYS! THE END OF THIS YEAR!!!

Ahem. As I'd said last week, I'd been on the fence about taking Lemon in to the clinic for his appointments on Friday, due to the COVID situation in Wisconsin still being absolutely terrible. But, the doctor said he felt it would be safe for us to come, our county is in somewhat better shape than other parts of the state, and the hospital is of course being fanatical about infection control. I asked Lemon what he would prefer, and he said that he would prefer to go in person, since his doctor couldn't get the video conferencing to work well last time (true). So, between that and the fact that we need to be there in person to do the consent for this new research study, I guess we're going in. Honestly I think we are due for an in-person visit, it has been over 6 months since any medical person actually physically examined Lemon, a lifetime record for him. 

Oh and it was my birthday and our 10th wedding anniversary. I knew something else was going on this week. Thanks to all of you for reaching out, it was great to hear from everyone and we did manage to make the weekend special despite the extraordinary times.