Monday, June 7, 2021

June 2021: On the cusp

 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 shock to their systems (and ours). 

May was also CF awareness month. The annual Great Strides walk was virtual again this year, and for our team consisted of putting on our team T shirts and walking around the corner to pick up our weekly CSA share. But, the length of our walk should not be in any way construed as reflective of our commitment to the cause, which is as strong as ever. Thank you so much to everyone who donated to our team, and we are really looking forward to having the walk in person again next year. It's a great chance to connect with other CF families in the area, which we otherwise almost never get a chance to do, even without a global pandemic.

Lemon had a clinic visit last week, which was in person. I think since we are still spending so much time at home, the chance to be out of the house and the center of attention is still very exciting. He did a great job on his PFT's. It is amazing to see how much skill and control he has developed since he first started doing them. His lung function looks great and he's continuing to stick right on his growth curve so everyone was very pleased with him. His cultures came back clean as well, so that is great news.

I think we and many other households in the CF community are on pins and needles tonight because tomorrow is the day that the FDA is supposed to announce its decision on whether to approve Trikafta for ages 6-12. We have been waiting for this day for Lemon's entire life, and it is hard to believe that it is finally here. We have all the necessary labs, exams, and paperwork done, and Lemon's doctor is prepared to write the prescription for it the moment the FDA makes its decision. So, fingers crossed that the decision goes our way. I can't wait to see what the next chapter of Lemon's life will be like.