Monday, January 22, 2018

Week 231: Kookaburra


This week, I would like to begin by describing a dream that I had one night this week. I don't usually remember my dreams, but this one was especially vivid. Here it is: I dreamed that Papa Bear and I were living all by ourselves in a small, modern apartment in Cambridge. Just the of us, no kids. The plot of the dream was as follows: I woke up (in my dream) after a full night's sleep, sat down at my table with a cup of hot coffee and read something. Also, it was silent. Completely silent. The end.

I have never really been good at interpreting dreams and I don't intend to start now.

What else is going on? Well, as predicted, our streak of good luck with colds has drawn to a close. A month of relatively good health in the middle of winter isn't bad, though, all things considered. This one is a weird one, though--when Lemon first got it, it came on fast and hard, from zero to a really severe cough that was making him cry in his sleep within 12 hours. And let me assure you as a CF parent, there is nothing more heartbreaking than hearing your poor kid cry in his sleep because coughing hurts. Papa Bear and I were sufficiently alarmed that we started talking about Cayston right away, but agreed that since he had no fever and that it had only been 12 hours, we were too seasoned in this fight to just jump straight to the intervention plan. I'm glad we didn't, because by 24 hours in, the cough had backed way off, no more crying, tolerating the full volume of his tube feed at night with no trouble. But it's lingering in a way that I don't necessarily like. He's still got a pretty frequent, loose-sounding cough. On the other hand, he is clearly feeling fine and the tube feeds are still staying down so we are just sticking with doing 3 vest treatments a day and watching.
Of course because he is not feeling 100% this week, eating has been much more of a struggle than last week. He did do one new thing, though, which is that we went to a friend's house for a play date and he actually ate snack there, which he'd never really done before. He usually gets thrown off by things not being exactly the same as what we have at home. But this time, even though the snacks were different, he sat down and actually ate stuff with his buddy. And, honestly, about the same volume of food as his buddy. I am cautiously optimistic that we've reached the two steps forward, one step back phase of this process, where we continue to make incremental but measurable progress. Now, to get that to translate into some more body weight. Sigh.





Lime has continued to wake up to pre-game with me at around 4 or 4:30 every morning, which is just awesome. He really likes fig bars, so my strategy is that when he wakes up, I grab a package of them, open it (it must be opened all the way, with the wrapper laid flat, otherwise he believes that he cannot get to the second piece), lay the opened package next to him on his bed, and tell him to eat it and go back to sleep. Which works in the sense that I get to be back in my bed from say 4:36-5:01. It's perfect. A few years ago there were lots of stories in the news about people who took Ambien or other sleeping pills and then would wake up and find their bed mysteriously littered with candy bar wrappers, which is pretty much the scene in Lime's bedroom right now. Oh well.

For those of you who are not interested in cat hilarity, you may want to stop reading here. Although, with the news cycle we've gone through in the past week, who couldn't use a little cat hilarity?

First, both Duncan and Donut figured out how to do this:

Next, we got this:
Here's where we are now:
Anyone have a metal canister with a screw top (preferably locking) lid to send me?