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.

Week 380: Thankful

 Even by our new Wisconsin standards, this was a pretty quiet Thanksgiving. With an order in effect precluding gatherings of people who live in different households, it was just the 4 of us here for the big day itself. I did cook a bunch of things and packed up a to-go bag for Nona and Opa, so we all ate the same things, albeit not at the same time nor in the same place. Other than that, we pretty much laid low--went to a couple of parks, watched movies, played games, read books, etc. Lemon (Lemon!!) seems to have picked up his father's taste for chess, so they played many games of  that over the weekend. Both kids also developed a renewed interest in the Teenage Mutant Ninja Turtles, the theme song of which I can still sing from memory from when my brother loved them decades ago. 

On Thanksgiving day itself we did a Zoom toast with all of my far-flung cousins, aunts, and uncles, which was a treat. I haven't seen any of them in person in a couple of years, and it was great to have a little taste of our old family Thanksgivings back in Boston, when all of us would descend on the home of one of my aunts and uncles and pack it to the gills with people, food, conversation, and laughter. After all this time away from other people, it was good inspiration to plan that long-discussed family reunion, once these COVID times are behind us.

Now we're getting back in the swing of things with our little learning pod, which continues to feel like pretty much the best idea ever (even if indoor recesses do make my "office" a bit rowdier than the average workplace). I am impressed with how much the kids are learning, even in this unconventional format. Both kids have made so much progress on their reading and writing since school started. And Lime now has loose teeth. When did they get so grown up?

Now it feels like we enter a new period of waiting. Waiting to see what the Thanksgiving holiday has done in terms of increasing the spread of COVID all around us, waiting for Christmas, waiting for the adult vaccine to become available, waiting for the pediatric vaccine trials to get going. Waiting for 2021 and all that it might hold for us. Hang in there, everyone!

Week 379: Topple

 

The kids have reached the point in the pandemic where they have set their sights on YouTube stardom. So, I humbly present to you their efforts thus far. Other than their quest for fame and riches, it has been a fairly quiet week of pandemic life here, for which we are all grateful. I did my big pre-Thanksgiving shopping already, in a semi-successful attempt to beat the crowds. Of course, this year we aren't exactly having a big group, I'll make dinner for the four of us (and, let's face it, I'm the only one of the four who will actually eat everything that I prepare), plus a to-go order for Nona and Opa to enjoy at their apartment.

Although we're sad not to be spending Thanksgiving with more people, it is obviously the right thing to do, and we'll look forward to more holidays in the future where we can be with family and friends. In the mean time, we will continue to explore different crafts, science experiments, reading, writing, parks, and whatever else we can think of to stay entertained and occupied until this has passed. And, with the promising news on 3 vaccines, we can begin to hope that this will be in the past before too long. 

So, stay strong everyone, we are thinking of all of you. Come Zoom with us for now, and we will see you soon!

Week 378: Just part of life

 Today, when I encountered a pile of crumbs on the floor left by a certain chip-consuming 5-year-old, I asked whether it was really my job to clean them up. I was informed that cleaning up crumbs was "just part of life." Buck up, buttercup.

And buck up, indeed. With Thanksgiving around the corner, and the pandemic more out of control than ever, bucking up seems like just the thing. At least with the good news about the two vaccine trials this week, there is some prospect of things getting back to a semblance of normal sometime next year. Meanwhile, we all  out in our little pandemic bubble and wait.

I did finally manage to connect with the coordinator of the hyperpolarized xenon study that Lemon will be a part of. They are indeed continuing with the research at least for the moment. Lemon is scheduled for their next available imaging appointment, which isn't until late January. Honestly I am glad it is a couple of months away. I would not have brought him in to campus under the current circumstances, and we can just see what the lay of the land is like closer to the time. I am fully committed to participating in as much research as we possibly can, but even I have my limits. And taking my kid to the biggest hospital in the region for a non-essential visit in the middle of an out-of-control pandemic is just a bridge too far. And yeah, those liver labs that are not exactly essential but not exactly non-essential? Yeah we'll be holding off on those, too.

Other than that, Lemon's weight seems to have stabilized at around 63-64lb, which is about 2lb below where it was when we reduced the volume of formula. If that's really where we are, then I am happy with that and we will stick to the lower amount for now. I haven't really seen an uptick in his eating yet, but maybe that will come with time. As I have said to myself every day for the past 5 years. But I am eternally optimistic.

Home school continues to go along, although even with all the masking and social distancing there have been a few coughs and runny noses already. So far, they've just caused alarm and anxiety, but all the members of the pod who have gone for tests since the school year started have been negative. It does bring home in a real way how challenging this pandemic is to manage, though, when every possible symptom _could_ be a COVID symptom, and every test result takes 3 or 4 days to come back. 

I can't really comprehend that Thanksgiving is next week. We, of course, will not be going anywhere, nor will anyone be coming here. It will be a little grim, but let's think of it as a down payment on some amazing Thanksgivings to come, when we will be even more thankful to be with our friends and family again.

 

Week 377: Keep swinging

 Phew. Finally. And by that I mean, finally, a reprieve from the incessant barrage of political texts, emails, and phone calls that have been the soundtrack of the swing-state voter lifestyle these past weeks. Well, just kidding, I got one from the Ossoff campaign today, but at least the volume is way down. 

With the national news basically eclipsing everything else, it is hard to even remember where we left off. On the other hand, in these pandemic days, each week is more or less the same as the one that preceded it. The situation in Wisconsin continues to get worse instead of better, and we are just hunkering down and trying our best to stay safe. As I told a friend recently, we have reach the "grinding your own flour" phase of the pandemic, thanks to the nice grinder that Papa Bear got me for my birthday. I also made my own fermented hot sauce, as one does under these circumstances. 

The kids are continuing to cope with this strange year surprisingly well. Online school can still be a struggle, and the Zoom classes definitely wear on the attention span after a while. Still, I can see every day that the kids are learning, their literacy and math skills continue to grow. Maybe not at the pace that they would be growing in the classroom, but who can really say? This is the school year we have, there is no counterfactual. The one thing I can say with confidence is that they are happy and healthy, and that's pretty much the whole ballgame at a time like this.

We've continued with the lower amount for Lemon's tube feeds, and unsurprisingly he has lost a little weight. I am trying to remain calm and give it some more time. He had plenty of weight to lose, being in the 90th percentile for BMI when we began the experiment. So, even a few pounds lighter, he is still by no means light. I'm hoping he'll settle into a new groove, but we will continue to monitor it and if he dips too low, we can always go back up on the volume. It does feel a bit weird letting him lose weight going into a winter, but I'll give it til the end of the month and then reassess.

We are still supposed to go back to Children's hospital to have blood drawn at some point, but honestly the idea of going near the hospital right now sounds terrible, so I think we will continue to wait. We haven't received any calls about the new clinical study that Lemon consented to participate in, so I wonder if they decided it was just to high risk to proceed at the moment. Waiting is fine with me on that one as well. 

And that's kind of the way of it for now. Wait, bide time, stay home. We've enjoyed this last bit of warm weather, a quick reprieve before winter sets in for good. The sunset at 5pm does feel rather ominous, but we'll get through it somehow I'm sure. 

376: Don't boo, vote

 I know no one is reading anything tonight. Look, kid photos! How cute! Vote! Vote! Vote! See you on the other side!

Week 375: New York state of mind

 We have been unbelievably fortunate these last few weeks to have an out of town visitor, namely Uncle Jared, who went absolutely above and beyond to come here safely to visit during these insane times. He flew to WI from New York, quarantined for a week, took a COVID test, which was negative, visited with all of us for a couple of weeks, and then left again on Sunday morning to go home and quarantine for a further two weeks before reuniting with Auntie Lauren and the rest of his regularly scheduled life there. The kids were absolutely thrilled to see him, and had a blast playing with him and showing him all of their new skills. We feel so fortunate that he was able to come, and so sad to think how long it will be before we can see him again.

Pandemic life continues to rumble along. We are getting a little taste of what winter will be like, with the days getting colder and darker, and our first dusting of snow. The kids are getting a little less willing to go play outdoors, and the feeling of impending cabin fever is real. At least our learning pod still seems to be working well, the kids do seem to be acquiring new knowledge, and at least they have their two school friends to interact with so it isn't just the two of them.

Other than that, we have switched Lemon over to the 3 cartons a night of formula. That seems to be going fine, I should have him get on the scale at some point just to check an see, but he still looks plenty hefty to my eye. The only strange thing about it is that after years of conditioning I am so programmed to wake up at 2:30 a.m. to turn off the pump that when it goes off at its new time of 12:30 it wakes me from a dead sleep, and I still wake up at 2:30 expecting to hear it. I'm sure my brain will retrain itself eventually. We also switched Lemon to his new dose of ursodiol, and now I'm figuring that as long as we haven't had the labs drawn yet anyhow, I am going to let him go for a few weeks at the new dose and then bring him in for the blood draw, so we can see if the new dose is sufficient to keep the liver enzymes where they need to be.

Meanwhile I am trying to rekindle some of my indoor hobbies so that I have a chance of staying sane over the winter. I started doing origami again, and I baked my first-ever traditional fruitcake, which I am now "feeding" with brandy twice a week. Kind of like a very tasty-smelling houseplant. I hope you all are well and are likewise finding ways to fend of the impending doldrums of winter. Hang in there!