I had a really great conversation with the principal at Lemon's elementary school. She seems extremely on top of things, and has a lot of experience with 504 plans. She agreed with the consensus from other CF parents that it is totally appropriate and advisable for Lemon to have one. She also suggested that, since he doesn't have too many acute needs, that we wait until October or so to actually put one in place. That will give his new teacher some time to get to know him and for us to figure out what will help him the most. I'm going to meet with his future teacher later this month to give her a sort of initial download on CF basics and figure out a plan for dealing with enzymes. Beyond that, I guess we'll just tackle things as they arise, and then consolidate them into the 504 plan a bit later on.Speaking of enzymes, Lemon is now doing 100% of his enzymes as pills. I can't believe it. We switched from the Creon 6000's that he was using when he was learning (slightly smaller than a TicTac) to the 12,000's (about 1.5 TicTacs) so that he would only have to swallow 2 or 3 pills at any given meal. He rolled with that change, no problem. He has now completed all the squares on his reward chart, and his new remote controlled car is on its way to Cape Cod, where we will rendezvous with it on Saturday if all goes according to plan (both from the car's perspective and ours).
I am also pleased to report that we finished our second course of azithromycin and Lemon's cough has not returned, so (fingers crossed) we may have kicked H. flu once and for all. I had a sort of "hilarious" MyChart exchange with the clinic, in which I preemptively asked for a next plan in case azithromycin failed. First of all, I learned that his nurse-practitioner is out through the end of next month. Nice of someone to let us know about that. So, I instead had an exchange with the pulmonologist who is head of our CF center and who last saw Lemon in person say 2 or 3 years ago. In any case, he seemed genuinely puzzled as to why I wanted to know what the plan was, and also was quite skeptical that H. flu was the cause of our problems. Luckily, the exchange was not in person so there was no chance of me yelling either "BECAUSE EVERY TIME WE DON'T HAVE A PLAN WE HAVE TO TALK TO THE DOCTOR ON CALL AND THINGS GO TOTALLY OFF THE RAILS BECAUSE THEY DON'T KNOW HOW TO TREAT CF" or "HIS FATHER AND I BOTH HAD PNEUMONIA LAST MONTH, IT'S NOT A COINCIDENCE!" Anyhow, he did manage to produce a plan for us, which hopefully we won't have to deploy, but sheesh.
In other news, we got Lemon's vitamin levels back from the his annual labs at long last. "Got back" is something of an overstatement, as I had to send a separate MyChart message to the dietitian, since the results failed to post automatically. In any event, the good news is that all the vitamins they measured were within the normal range, including Vitamin D, where he has always been either low or at the very bottom of normal. It's almost as if measuring Vitamin D in June instead of February leads one to different conclusions. How fascinating.It's hard to believe, but in a day or two I will have to enter serious trip preparation mode. Our package of formula and whatnot has already arrived on the Cape, which is great. Now it's merely a question of getting all the other things and people packed up and out there as well. I talked to Lemon and he is totally on board with doing manual PT while we are away, which is great in that it saves us the hassle of dealing with the vest. So, that's one less thing to deal with, bringing the total number of things that need to be dealt with down to a much more manageable 9,999. East coast people, we will see you soon!
