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!
Not 6 weeks ago, we had snow on the ground here, and for the last 4 days, the temperature has been above 90 degrees, a record-breaking heat wave. This was a good reminder that just as there are CF things to do in the winter, there are also things in the summer. Lemon is incredibly sensitive to heat, and turns bright red in response to even a brief heat exposure. So much so, that Papa Bear thought he had gotten sunburned (not an unreasonable thing, given Lemon's near-translucent skin tone). But, sure enough, after a half-hour or so in our air-conditioned house, Lemon was back to his ghostly little self. We've started adding extra salt to Lemon's overnight feeds as well, to try to give him back some of the salt he's losing to sweat during the day.
Beyond things having gotten a little too hot too fast, both kids have been flourishing since the end of winter. It's been amazing to watch them come out of hibernation and run themselves ragged every day with constant outdoor adventures. The warm weather has been incredibly good for Lemon's appetite. Papa Bear and I were estimating that he probably is actually eating several hundred calories a day by mouth now, which is quite an achievement for him. Still not enough to sustain himself, but I do feel like for maybe the first time he is actually experiencing hunger and understanding that eating is the way to address that feeling. Having a little brother who is in basically continuous graze mode certainly helps too.
With today being Memorial Day, it is also starting to hit home for me that Lemon's time at his preschool is drawing to a close. In two short weeks, he will be done with 4K and on his way first to summer camp and then to elementary school. In other words, I need to get started on laying the groundwork for him in both places. We have a clinic visit coming up next week where I will see what guidance they can offer me in terms of getting things organized for him at the elementary school, and I should really reach out to the summer camp soon to deal with training someone there how to give him his enzymes, and get whatever doctor's note they need in place.
I'm also pretty optimistic that we will be able to teach Lemon to swallow pills sometime between now and September. His gag reflex is way better than it was a year ago, and food school has given him a lot more confidence in his oral skills. I'm thinking that doing enzymes at school will be easier and less obtrusive if they don't have to get involved in the whole capsule opening/applesauce scooping scenario. So, now our main challenge is just finding the time to work with him on this new skill every day. Hopefully we'll be more successful with pill swallowing than learning to read...
