There has been a lot of interest in the concept of infinity in our household of late. Is it a number? Is it a concept? Can you be infinity years old? Can you count to infinity by tens? All of these questions take on a whole new meaning when they are contemplated during the nearly infinite number of days that seem to be situated between the end of summer camp and the beginning of the school year.
In the general context of run-up to the school year, we had Lemon's "Ready, Set, Go" conference with his teacher. I emphasized that we were totally ready and set, and that I would be happy for going to commence as soon as possible. Apparently that's still the Tuesday after Labor Day. In all seriousness, though, it was good to meet with her, and I feel very fortunate that our school "wraps" kindergarten and first grade so Lemon will have the same teacher, classmates, and classroom as he did last year. Which also means that I am not at all concerned about how we will handle his medical needs in the coming school year. We have our enzyme plan, and the teacher already emailed me their daily schedule so that when the time comes I can do my whole routine of zipping in and out like the nebulized antibiotics fairy that I always aspired to be.
We also FINALLY managed to secure a new afternoon nanny. Well, maybe I shouldn't get ahead of myself since she doesn't start until Wednesday, but at least in principle she's agreed to join us. At a price. The labor market must be really tight this year, because our candidate (singular) had 5 offers. So, the year will be a little more expensive than we were planning on, but I keep reminding myself that this is the last year that we will have a kid at home for any substantial part of the weekdays. And it will be worth it to have the amount of coverage that we need. Plus, honestly, the nanny probably does deserve combat pay to be in our house all afternoon.
On Thursday evening of this past week, Papa Bear and I attended a new kind of event organized by the CF Foundation, a social evening for parents and caregivers of kids with CF. It was walking distance to our house, and luckily Grandma and Grandpa were still here to watch the kiddos. We had a great time chatting with the other families that were there. One I'd met before and one not, but it hardly matters, meeting other people in the CF community is like meeting old friends, whether you know them or not. There is an instant connection and understanding of the ins and outs of each other's daily lives and struggles. Since someone from our local CFF office was there at the event, it was also a great opportunity to give the foundation some feedback about areas where we could use their help and influence.
Coming up this week is Lemon's next clinic visit. I think we're in a good position, exactly where I'd hoped we'd be at the end of the summer. His weight is good, he's at respiratory baseline, and feeling great. I think at this visit we're doing some new pulmonary function tests (assuming we can get him to cooperate, of course) along with all the usual stuff. I am also going to talk to the nurse practitioner about the possibility of enrolling Lemon in the Vertex clinical trial, and see if she or anyone here has a connection in Minneapolis that I could talk to about it. I know it would be a big logistical burden to participate, but it would also be a huge opportunity, and an honor to pay it forward to the rest of the community, whose participation in trials in the past made everything that we have today possible.