Monday, May 7, 2018

Week 246: Getting oriented

Saturday was Lemon's kindergarten orientation. I was a little apprehensive about it, because he can be pretty shy, but it turned out he was more than ready for it. He was so excited to walk from our house to the elementary school like a big kid, and went off with his teachers and a bunch of kids he didn't know pretty willingly. It helped that there were two kids from his preschool in his orientation group, but he got caught up in the action so quickly that I'm not sure how much it mattered.

His teachers and I had discussed how to deal with snack time, since he would need to take his enzymes before eating. Ultimately, we agreed that I would just slip into the classroom at the appointed hour to give the enzymes myself, since the school needs a doctor's note in order to give medication (the fact that his enzymes are actually prescribed by a nurse will, I assume, be a battle for yet another day). I was a little concerned that he would want to leave with me after getting his enzymes, but that worry was also misplaced, since he was so engrossed in the story that the teacher was reading that I could barely get him to turn his head towards me long enough to actually take the enzymes. So, all that seems promising, and he was very disappointed this when I told him that he had to go to his regular school this morning rather than back to kindergarten.

The kindergarten orientation did raise another issue in my mind, which is whether or not to file a 504 plan for Lemon. A 504 plan is a plan for the school to accommodate students with permanent disabilities. There is no doubt that CF is a qualifying disability, although I never ever in my own mind think of Lemon as disabled. Nonetheless, there are some accommodations that would probably make school easier for him. Another mom that I talked to (whose son has other issues, not CF) said that in her view the 504 was the best communication tool to get the staff of the school on the same page about what the child needs. That way of thinking about it resonated with me more so than thinking of it as a disability plan. So, I guess one project for this summer will be figuring out how to get such a plan in place. 

Lime is continuing to do pretty well with potty training. He was having a hard time doing #2 on the potty, though. It's a very common phenomenon among toddlers, apparently. One bad #2 experience and they resist doing #2, which inevitably results in subsequent bad #2 experiences and away you go down a #2 spiral. I am quite sure that if Lime had been my first kid, I would have been trying all kinds of things involving prunes, bran cereal, copious amounts of water, and endless cajoling/praising/bargaining. But, guess what, Lime is my second kid and my first kid has CF and has been on a staggering array of medications since he was 10 days old. So, I looked at Lime's situation and thought, I bet there's a chemical that can help with that. Sure enough, there is, and it comes in watermelon-flavored tablets that Lime finds quite delicious. And thus, we broke the #2 spiral. Better living through chemistry, people.

Speaking of better living through chemistry, let's talk again about drugs that treat the root cause of CF. Right now there are three on the market--up from zero when Lemon was born. Unfortunately, none of the drugs that are available now will
work with the combination of mutations that Lemon has. But, good news: medications that will work for him are in Phase III clinical trials, meaning they could be approved in the next couple of years for adults, and a couple of years after that for kids. We are so close to something that could fundamentally change Lemon's life trajectory, but we need to complete these critical trials to know for sure that these medicines will work well. Donations in any amount will help make sure these medicines are ready for Lemon to take, hopefully before he finishes elementary school. We are so close--help us get to the finish line! Please click here to visit our team page and help us achieve our fund-raising goal before our walk on  May 19!