Monday, September 28, 2020

Week 371: Immune

 Well, flu season is around the corner. So, it is time to remind everyone to get their flu shots. Get your flu shot! Yes, you, even if you are doing social distancing and masking and all that. I, like many others I am sure, received automated messages from our healthcare providers with more or less that message. And, being a conscientious CF parent, as soon as the message came in, I got on the phone to the kids' pediatrician's office to schedule them. I gave their last name, their first names, their birth dates, confirmed my address, my phone number, etc etc. And then the scheduler paused as she scrolled through the calendar. And paused some more. And then said, "You're not going to like this. The first date I can do both kids is December 3rd. Otherwise, you can go to the online system and schedule them there." 

She was certainly correct that I had no intention of waiting til December 3rd for flu shots (which their own email says I am supposed to get as soon as possible). Unfortunately, for our kids, "as soon as possible" appears to mean two separate days during the second week of October, at two different clinics, one near our house and one across town. Because obviously that makes complete sense and is very convenient. I have to tell you, this experience does not fill me with tremendous hope for any forthcoming mass-vaccination efforts that may involve two shots given some number of weeks apart.

In other news, Lemon was having some trouble with his vest during his treatment this morning, it wouldn't stay in quite the right position. When I was called in to see what the matter was, it became obvious immediately that he had completely outgrown it! Not that this should be a surprise, since all his favorite T-shirts are also too short and too tight, but it is kind of impressive that we failed to notice him outgrowing his vest so completely. So, this morning I got on the phone with the good people of Respirtech and a new one the next size up should be arriving soon. Now if only the new compressor for his nebulized meds that I'd ordered 3 months ago and that was back-ordered "6 weeks" would ever show up, we'd really be in business.

Other than that, virtual school continues to roll along. I got an absurd email from the school district last week noting that the first quarter is done sometime next month (what?!?) and wanting me to express my preference for fully virtual vs. hybrid for the next quarter. Excuse me, I'm sure you had the email drafted weeks ago, but have you noticed how there is an epidemic literally raging out of control in our state right now? My preference (which is to remain fully virtual anyhow) is totally irrelevant! There is no way the schools can open for the second quarter no matter what anyone wants. Anyhow. Please stay safe, everybody. The next few months will not be easy.





 

Monday, September 21, 2020

Week 370: Notorious

 The outside world appears to be doing its best to encroach upon our little plot here in Madison, what with the pandemic raging unchecked in our state plus the endless stream of political crises and scandals. Nonetheless, we are doing our best to keep things vaguely normal-seeming for the kids, who obviously know about the virus but remain fairly oblivious to the machinations of the institution heretofore known as "the world's greatest deliberative body." 

Virtual school has entered its third week, and with that the teachers seem to have decided that it is time to increase the expectations on the kids, who were perfectly fine with the previous expectation level and were totally exhausted today after being pressed to finish assignment after assignment. Hopefully after a couple of days they will get used to the new workload, although part of me shares their wish that the teachers had just stuck with what they were doing last week and let the kids have a bit more fun during the day. On the one hand, I see the benefit of keeping them occupied (and hopefully learning) for more hours per day. And on the other hand, they're so happy running around outside. It's hard to spend all day in the basement in front of a computer, as Papa Bear and I can readily attest.

A definite benefit of being home all the time is Lemon's continued weight gain. He is almost 65lb now, which seems impossible given how long we struggled to reach 50. We have a clinic visit coming up in a few weeks, and I think to my amazement I am going to raise the topic of further cutting back on his tube feeds. He is eating so much by mouth now, and I really want to give him the space while he is home to learn how to keep up with more of his caloric needs by eating. He is interested in some day not having the tube anymore, so any progress we can make towards that goal will be exciting for him.

Other than that, we continue to try to make the best of our largely home-based life. Mud, rocks, cooking, baking, coloring, reading, and wondering what all this will feel like when the temperature drops and the number of hours of daylight falls. Papa Bear recently bought a Nintendo Switch ("for the kids") so they have been enjoying that and I suspect will get a lot of use out of it once winter comes. Anything to make life a little more interesting and fun, I suppose, as long as I am not expected to while away my own winter playing Mario Kart!







Monday, September 14, 2020

Week 369: Remotely

 We officially survived the first week of remote school. And, now that it is in the past and I can't jinx anything, I am pleased to say that it went as well as I could possibly have hoped for. All the kids showed up, the teacher showed up, our enhanced internet was sufficient to support 4 different Zoom meetings at the same time, and despite the fact that it rained all day every day, no one lost their mind. Now I just hope that we can sustain this setup throughout the school year, but that goal feels infinitely more possible knowing that we did manage to do it for a week. I am impressed with the teacher, she is very calm and manages to keep the kids pretty focused on their work. My office is just a few steps away from the school room, with no intervening door, and I almost never hear the kids during the day. And, knowing what just my own two kids usually sound like during the day, that is really saying something.

I wish I could say that the situation outside our home was as hopeful as the situation inside it, but alas that is not the case. The COVID-19 situation in Wisconsin generally and the Madison area specifically is not looking too great at the moment, with case counts continuing to climb, largely among students and staff at the university. So, we are all on heightened alert and doing our best to minimize our contact with the outside world. Recreational activities have included "walking up a small hill and looking at nearby water towers" and "attempting to make a fire and then poking it with a stick." But, staying safe is the most important thing.

Even as someone who has now been working remotely for 5 years, I am feeling the increased level of remoteness in my life. Last week, I ran the remote Boston marathon, during which I saw a total of maybe 5 other humans along my early morning path west from my house. Yesterday, I met with my book group over Zoom. I'm taking a course this semester, which is also online only. So, more and more  I feel like I am connected to the outside world only through technology. As the weather begins to feel more and more like fall, I worry a bit about what winter will be like. It is hard to imagine anyone becoming more reconnected with the outside world during that time. Stay strong everyone, and we will see you as soon as we can.









Monday, September 7, 2020

Week 368: School eve

 After a month of planning and preparation, it all gets real tomorrow. We've organized our supplies, set up our furniture and decorations (thanks, Nona!), and had one last outdoor gathering with the other families in our learning pod. We've practiced logging into the kids Chromebooks, we've attended the warm-up Zoom meetings, we've driven through the school parking lot to pick up the first packets of handouts and materials. We've set up our air purifiers, bought more tiny little kid masks, and cleaned all the high-touch surfaces. And, at last, at 8:30 tomorrow morning, it really starts. The teacher and the other kids will show up, and the school year will begin. 10 feet from my office.

I still feel like this was the best, really the only, plan for our family. I am sure once we get the kinks ironed out the logistics will work fine. I just wish we were starting the school year with the pandemic under better control in our state and our county. As will come as a surprise to no one, reopening the university has not had a salutary effect on the number of COVID-19 cases around here. So of course we are taking every precaution we can. And starting this learning pod also represents a dramatic expansion of our potential exposure to the virus. One day at a time, and fingers crossed.

I'm a little sad to see the summer end. In some ways, it has been quite long, and in others, it went by in a flash. We stayed home the entire time, saw very few other people, and did very few things. And yet, we had a lot of fun as well. It was not the summer we had planned by any stretch of the imagination, but on the other hand we all stayed healthy and Lemon now weighs an astonishing 63lb. So, all in all, I will take it. 

Now it is time to buckle up for fall and winter. I wish I were more optimistic about the next couple of months, and I would love to be pleasantly surprised. Yet, I suspect, this will be a great challenge for all of us. Please be safe out there, don't lose your mind on too many Zoom meetings (your own or your kids') and we can't wait to see you in person when this is all over.