It is so hard to sit down and write a blog post on a night like this, when, to top off all the other various crises that are going on in the world right now, a horrific mass shooting has taken place in Las Vegas. The infinitesimally small daily struggles of our household barely feel worth writing about. Honestly, they become hard for me to concentrate on, never mind all of you out there on the internet who aren't daily participants in these little dramas. And yet, despite the demands on my attention from the outside world, I know that I can't take my eye off the ball here even for a moment, because the nature of CF is such that if you coast for even a day, you will pay the price. So, I once again acknowledge that I am writing this blog as a reasonably well-informed citizen of our country and of the world, but that I will remain true to its focus on the life of one family living with CF.
We had a clinic visit on Wednesday, which went well all things considered. Lemon did very well with his pulmonary function tests. He was able to produce consistent results this time, and was much better at controlling his breath as he blew into the machine. He just needs to figure out how to breathe out for longer, and then we will be able to get some real numbers on how his lungs are doing. Of course, the fact that we have to go to the pulmonary lab at the beginning of every visit just makes these check-ups even longer. I had to suppress a laugh when our nurse practitioner (who we didn't even see until we'd been in the clinic for over two hours) told us that our _next_ visit is going to be "epic" because at that one we'll have to do a chest x-ray and a blood draw also. Trust me, two hours in an exam room with Lemon is already a fairly epic experience.
We are still struggling with weight gain. We'd backed down on tube feeding over the summer in order to give Lemon space to be hungry, to maximize the chances that food school would actually get him to start eating things by mouth. Instead he lost weight, so eventually in late July or early August we decided to go back up to his usual tube feeding volume. Then school started and he got a cold, so we had to back down on the volume again to avoid all the vomiting. Then he managed to get over that cold without any antibiotics (!!!!) so we went back up on the volume. That got us to Wednesday, where we'd managed to get his weight back up to just under where he was in June. Then, of course, having been well for a week or so, both kids came down with a second cold, so now we're back down on volume again. Sigh.
On the plus side, we once again have a working refrigerator, which feels like nothing short of a miracle. Lemon is fairly obsessed with the fact that water and ice come out of the front of it. And, one has to imagine that some day, somehow, he will become as interested in its contents as his younger brother is.
I'm leaving on a quick trip to Denver tomorrow morning, so we shall see how the males of the household do for 72 hours unsupervised. Dominoes Pizza may be called upon. Luckily Lime is now sleeping as late as 4:45 on a regular basis, so Papa Bear should be just fine. By which I mean, send coffee and forgive him if he seems sort of dazed. He should be back to normal operating parameters again by Monday I would think.
