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...
