Week 384: To the teeth

 I hope all of you are having a safe and happy holiday week. We are hunkered down here in our little corner of Madison, but just because we are hunkering doesn't mean we aren't having fun. The kids, for example, are pretty much having the time of their lives thanks to the generosity of everyone who gave them stuff this year. The number of things I have assembled from tiny individual plastic parts over the past few days is sort of mind-boggling. Also, my house seems to be littered with an absurd number of holiday-colored Hershey's Kisses wrappers. And, Lime managed to lose his first tooth on Christmas Day, while "secretly" consuming said Hershey's Kisses. But, did I mention the kids are happy? They are happy. And when you get down to it, that is what matters.

It is hard to believe that we have made it to this moment, the very last few days of the year 2020. What a year it has been. In stark contrast to what has been going on all around him, this has probably been the healthiest year of Lemon's life. He's grown tremendously, hasn't been sick a day since April, and has been able to almost forget that he isn't quite like everyone else. Being home all the time suits him just fine, he continues to be, in his favorite babysitters words, a "house cat." He likes being in his comfortable, familiar surroundings with all his stuff, and even now when leaving the property is a rare treat, he almost always asks if he can just stay home instead.

I am not sure what to expect from 2021, and perhaps it is best to just set expectations to a minimum and see what happens from there. I am still hoping that within the next few months, Trikafta will be approved for Lemon's age group, and then this state of health will just become his new normal. On the other hand, I am concerned that there most likely will not be a COVID vaccine for kids his age by the time fall comes around again, and we will be faced with some really difficult decisions about whether either of our kids goes back to school, or if not, what the alternate plan will be. 

But, all that lies in the future. For now, I just want to wish all of you loyal readers a happy new year. It feels good to bid 2020 farewell, and I hope to see all of you next year!

Week 383: Not quite there yet

 We are so close to the end of 2020. But, in true 2020 fashion, this year had at least 1 more trick up its sleeve for me--a very urgent end of year project! So, please enjoy these photos of the kids getting in some of their last 2020 kicks, and with any luck I will be able to provide you with a more cogent summary of the year next week!

Week 382: Let it snow

 It looks like we will be having a white holiday season here in Madison, with 7" of fresh snow falling over the weekend. The kids were of course beside themselves with joy at this transformation of their world. Luckily the new boots I ordered (since when do I have children with feet this big?) arrived just in the nick of time. With only 4 days of school left until winter break, let's just say that spirits are high among the younger generation. 

After weeks of watching Lemon's weight gradually tick downward, following our attempt at cutting back on the tube feeds, I decided we reached a point at which I was not comfortable going any lower, so we've added back DuoCal powder for now, to see if we can get things to stabilize. He is still eating more than he ever has before, but it is still clearly nowhere near enough to actually sustain him, and his intake didn't increase as much as I had hoped to fill the void left by the missing formula. Oh well. It was worth a shot. 

We, like everyone else, are so excited about the great vaccine news, it really is starting to feel like there is a way out of  this mess. We just need to continue to be patient, especially for the kids--it is sounding like a vaccine for them is still a bit of a ways off. Now I am wondering, will Lemon get Trikafta first, or the COVID-19 vaccine? No matter the order, I have high hopes for 2021!

Week 381: Make or break

 December is upon us, and with it, the impending threat of two weeks without school and without much else to do, either. So, we have been busily preparing ourselves (aka bracing for impact) to the extent possible, thinking of plans and activities that we can do to safely pass the time while school is out. I'm not sure that we have any marvelous ideas so far, although my instinct is that some sort of schedule or structure will be important. I am also thinking about themes for each week, so that we can organize our activities around some kind of unifying principle. So far, the kids have not managed to come up with anything they affirmatively want to do, although they are very willing to reject out of hand the ideas of others. So, we shall see.

Meanwhile, we have been trying to get the most out of these last few mild days of December. Opa and I went on a nice hike, and then we took the kids on a much shorter little walk closer to home. While walking in and of itself is still not a preferred activity, there was a body of water that could be poked with sticks, which is of course a highly compelling Saturday afternoon pass-time.

Despite their protestations and general grumbling, I'm continuing to see big progress in both the kids learning, especially reading. Nona got the kids a subscription to National Geographic Kids, and when the first issue arrived, Lemon pounced on it and began reading it through right away. Lime, meanwhile, is more interested in writing, and is composing his own book of facts about animals. He is also becoming a master at writing, shall we say, less educational works. At least he is keeping himself entertained.