Lemon has continued to astonish me with his interest in food. Whereas a week ago, he had a bit of a cold and was not really interested in eating, this week he has been feeling good and is continuing to push at his boundaries (in all respects, really, but we'll keep it positive and just focus on food). With no real prompting or pushing, this week he ate cornbread with butter, tomato soup, and a thin mint cookie, among other things. Perhaps most surprising was tonight at dinner, when I presented him with a plate of fairly safe choices (macaroni and cheese, salami, broccoli). He looked at his own plate, then looked at mine, and asked me for a cube of tofu from my stir-fry. I was skeptical but far be it from me to say no. He went on to eat 5 cubes.
He then remarked that the tofu was so delicious that I should make it every night, and that I should make a special point of making it for Valentine's Day. When I asked him why, he said that he wanted to give it to our neighbors as a Valentine's Day present. I pointed out that gifts are usually somewhat more durable and less coated in sauce--a nice box of chocolates, say, or some flowers. He looked at me as though I were totally naive to the ways of the world, and said, "No, not plain tofu, Ma. IN A BAG." Of course.I guess in summary I would say that I am so glad that we toughed it out at food school. I was very near pulling the plug on the whole thing a couple of months ago. Lemon was sick constantly, and it didn't seem to be helping at all. The only thing that kept me in it was the realization that once he starts kindergarten (which runs 8:30-3:30 here in Madison), we would not be able to do it anymore, so this year was our only shot. And that constraint kept me from making what would have been, in retrospect, a big mistake. Although, if we had quit, we would never have known that it _could_ have helped him, and the decision to quit would have seemed totally justified.
This theme is something that I feel like we come up against all the time in CF. We are trying something, and it doesn't seem to be working, or at least not working very well, and then we need to decide whether to keep trying it, or to stop and try something else, or to keep doing the thing that doesn't seem to be doing anything, just in case it is doing something, but then adding something else on top. It is a maddening way to try and make decisions, especially decisions with long-term implications for your kid's health. It's so rare to try something and get an immediate and clear read-out that it worked. I think that's happened to us twice, once with Cayston and once with ursodiol. Everything else has been much murkier.
CF advocacy day is a week from tomorrow, and planning seems to have kicked into high gear. I have a webinar to attend on Friday, and then next Monday night, an in-person training with the other volunteers. I'm really looking forward to it. After spending probably too much time these last weeks reading about the activities of our elected representatives on the internet, I'm so curious to meet a few of them in the flesh!
