Monday, May 22, 2017

Week 196: Not a sprint

If CF prepares you for anything, it's being unafraid of the dentist. Lemon was very excited to go for his cleaning because there are toys in the waiting room, and prizes after. He walked right in to the exam room, and got on the table. He very capably advocated for which tool he wanted the hygienist to use to clean his teeth (traditional metal, please, none of this high-pressure water business), and told her when he needed breaks. It turns out eating food actually helps keep your teeth clean, so Lemon had some extra buildup on his teeth due to his preference for not eating, but otherwise everything was fine.

If only CF prepared one for cows. The day after our highly successful dentist visit, Lemon's school had a field trip to a local dairy farm. It started off well enough. Lemon was very excited about riding on the school bus. He was even moderately (if briefly) excited about seeing the baby calves. He was emphatically not interested in feeding any of them from a bottle. He was even more emphatically uninterested in the barn where the cows were hanging out. So emphatically, in fact, that we had to leave the barn and stand outside were we could see the more interesting aspects of the farm (tractors, dump trucks full of hay, front end loader, ATV). The milking parlor was also pretty much a non-starter. He did eat a piece of string cheese at the end of the visit, though, which was reassuring--I was worried that the whole experience might have put him off dairy permanently.

On Saturday night, after the kids were asleep, I slipped out of the house and headed down to Rockford, IL, where I ran a marathon early Sunday morning. It was a great day for it and I set a new personal record, 4:07. I still aspire to get under 4:00 some day, but I put everything I had into the race on Sunday and I'm proud of the result. Honestly I'm looking forward to running a little less for the next couple of weeks and spending time on some much-needed upkeep around the house and the yard. But, don't worry, the next race is already on the schedule for October, so I won't be slacking off for too long.

At long last on Wednesday morning I'll be taking Lemon for his feeding evaluation. Eating has definitely been a bit up and down the last few weeks. Sometimes, he'll have a stretch of days where he eats "so much" (multiple bites multiple times a day) where I wonder if we still need the therapy. And then he'll have other days or weeks where I'm reminded that yes, we really do still need this. I think we're at the point where he's getting maybe 10-15% of his daily calories by mouth, which certainly feels like a big jump from the 0-5% we were getting for some of the winter, but it's not nearly at our goal of 50%.

After some discussion, we've decided to keep going with Cayston for one more week. We'd been hoping to stop after 14 days, but we knew we could only do that if Lemon was really 100% at baseline. And, he's just not. It's impossible to tell if it's still an infection, or if it's just allergies now, or what, which is frustrating. He's definitely much closer to baseline than when we started the Cayston, so I do think it was the right thing to do it. I just wish I knew when it would be OK to stop--with the high pollen counts right now, Lemon could be coughing from allergies for weeks (if past experience is any indication). Treatment is still such an inexact science. So, we'll just carry on for another week and then use our best judgement and hope that we got it right!

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