Week 354: Toothless wonder

As some of you long-time readers will recall, way back two hundred some-odd weeks ago, Lemon fell down and knocked one of his two top front teeth right out of his head, root and all. Since then, he's had a charming gap-toothed grin. I can now report that he is gap-toothed no longer, or at least that the gap is considerably bigger. He was pretty pleased with his prize from the "tooth fairy," although if you thought it was hard in this day an age to maintain an illusion about the tooth fairy, just try doing it when your kid knows for a fact that you're in his room every night at 2:30 a.m. to turn off a feeding pump. Yeah. He knows where the prizes come from.









Other than that momentous event, it was another fairly quiet week within these four walls, as the situation beyond the walls seems to grow more tense and charged by the day. This has always been a blog about the life of a family of a kid with CF, and I am not of a mind to change that now, although I do feel mildly ridiculous writing about lost teeth and posting pictures of our garden in the present moment, when I can hear sirens outside and know that our city has implemented a curfew and that so many people are experiencing so much anger and pain.



So, I think I will keep it brief tonight. I hope you are safe and well, and that you can find a way to make your voice heard and to bring about the changes that we need so that everyone in this country can be safe and have a voice.

Week 353: Scoot

As I think I've mentioned, we are not the most assiduous home-schoolers. But, between the age and temperament of our kids and the fact that both Papa Bear and I made conscious choices to pursue careers in fields other than elementary education, it's just not our thing. Nonetheless, we got a clear direction from Lemon's teacher once the schools closed that Lemon was to catch up to where he was supposed to be in Lexia, the literacy app that the school uses. And he was to do this by doing about 15 minutes per day of lessons. This goal was both concrete and seemed within the bounds of what our little family could accomplish. And so, every morning we worked at it. Until, finally, last week, Lemon completed the level that he was supposed to complete and earned his big prize: a scooter! Of course, Lime got one too, for being so cooperative about letting his brother concentrate. Or, that's what we're going with, anyhow.





It's hard to believe that we have an "end of year" conference with Lemon's teacher next week, and Lime's school is scheduling a drive-by event to wave at the teachers and pick up stuff that was left at school. It definitely has an anticlimactic feel to it. This was my last year with a preschooler, and I sort of thought the end of that time would feel like more of a watershed moment than it does. Especially since I had thought all along that the end of preschool would mean the end of the crazy schedule our family has been operating under for the past 5 years, and perhaps the beginning of something more tractable. With all the rumors flying around about what public elementary school will actually look like in the fall, who knows? But, one week at a time.






Otherwise, things continue to move forward in our quarantine life. There was no Memorial Day parade today of course, but Papa Bear organized a Transformers parade on our porch that the kids enjoyed. We worked in the garden, scooted around the neighborhood, made more ice cream, and generally enjoyed the long weekend. Not that the weekend feels that much different to the kids these days than the week itself. They are both just so happy and growing like weeds, though.

On the one hand, I appreciate the structure that school gives them and the amount that their teachers are able to teach them, which is far more than Papa Bear and I can manage. And then on the other hand, I see how much they are enjoying this and I wonder whether maybe some other cultures where kids don't start elementary school until they are 7 have a point. The pandemic is so awful, and no one would ever have wished for it. But, if one little positive thing to come out of it is for them to have this extended strange summer to spend together just being their wild little selves, well, I'll take that silver lining.

Week 352: Encampment

As the "school year" winds down, our thoughts turn to summer. Summer, a word so often followed by "camp." A time I had been particularly looking forward to as it was to be the first time that  I would get up in the morning, pack up the 3000 things and the kids, and take them both to the same place, drop them off, and not pick them up again until the late afternoon. For the first time since they were both born, there would be no mid-day childcare responsibilities. No multiple drop-offs and pick-ups. No wondering who would be covering that last critical hour or two of the workday. A glorious dream.

But, now, reality has intruded, and not at all in a way that I could have expected. Our camp is still sending out lots of emails. Almost daily, it seems, I get a reminder about forms that need to be filled out. Or, a survey to complete. Would I feel more comfortable if the campers wore masks? How about the staff? I managed not to write in the comment box "Do you remember how your business model is predicated on teaching 5-year-olds how to swim?!?!?"

We haven't actually withdrawn them from camp yet, as that feels very sort of definite. But, it is almost impossible to see how we would send them. On the one hand, I feel bad that they will miss camp, Lemon went to this camp last year and loved it, and Lime was very much looking forward to going. On the other hand, I think it's safer for them and for us if they don't go. And, honestly, they are so happy here at home right now that I think they will have a great summer. They can't learn to swim in a kiddie pool in our back yard, but they can have a lot of fun.

Lime is very sad about not having his birthday at the beach this year, but he keeps saying reassuringly to himself that we will still celebrate it, even if we are here at our house. I somehow suspect that as long as there are sufficient Transformers delivered on the big day, he will find a way to enjoy it.

 And so, this new version of our life rolls along. Home haircuts. Home-made donuts. Yard work. Oh, and a virtual relay race instead of the real relay race that I was supposed to do this weekend. A work step-count contest that I might be slightly competitive about. A weekly box from a farm instead of the farmer's market. Dreams of the beach and all the friends and family that we can't see right now. But, the weather is getting nice, the seeds are sprouting, and we're watching and waiting to see what happens next.

Week 351: Mother's Day

I've always felt like one of the great certainties about motherhood is that you never know exactly what is coming next. None of us would have thought at Mother's Day last year that this is how things would be at Mother's Day this year. And yet, here we are. As ever, parenting in unanticipated circumstances.

And, to be clear, we have nothing to complain about. Another somewhat chaotic and haphazard work week has gone by. The kids continue to be very happy, healthy, and full of life. I was even able to celebrate with my own mother, which is certainly a treat not to be taken lightly in these quarantine days. I received a whole bunch of books, so I now have enough new recipes and origami models to keep me going through at least another few months of this, should the need arise.

The one thing that I found completely hilarious this week is that I have received a number of notifications that there is no school on Wednesday. I have thus far managed not to write back to ask how I should detect that this particular Wednesday differs from all of the Wednesdays of the recent past. Whereas in times gone by, a random weekday with no school would have been something of a minor crisis, in the present state of affairs, it is, well, just Wednesday. 

Week 350: Telehealth

On Friday, we had our telehealth visit with our new doctor. Since this was our first real appointment with him, it took approximately forever. And, I have to say, it was so much better to do it by phone rather than trapped in an exam room with a bored 6-year-old. The doctor and I were able to go over things in a lot of detail, and Papa Bear was able to listen in and chime in with questions as well.

Focusing on the highlights, since all you readers are way more up to speed on the details of Lemon's history than his new doctor, here's the scoop. The new doctor is willing to concede that Lemon really and truly is allergic to azithromycin, so we can't use that as an anti-inflammatory as we had hoped. This is of course a real shame since our big goal post-bronchoscopy has been to reduce the amount of inflammation in Lemon's lungs. The only other alternative available at the moment is high-dose ibuprofen. And when I say high-dose, I mean high dose. Like 600mg, twice a day, for a kid Lemon's size (which, by the way, is 57 lb now!). The doctor agreed that it didn't sound like an appealing plan. So, our best hope is to improve the efficacy of Lemon's airway clearance, keep his exacerbations under control, and wait for Trikafta to be approved for kids his age.

The doctor conceded that this is not a very satisfying plan, and I have to say, it's not. We went from sticking with our current plan because we didn't know there was a problem, to sticking with our current plan because we know there's a problem but we have no alternative. I'm not sure this is exactly what I imagined progress would feel like. Still, we will be trying to teach Lemon how to huff-cough (having attempted to teach him to tie his shoes, I'm not exactly anticipating rapid results) that at least we're doing something more to try to help him. On the plus side, our dietitian was thrilled with Lemon's weight gain, which has been a big upside of this whole "Safer at Home" period. Amazing what eating 18 separate snacks per day will do for one's weight.

Meanwhile, speaking of Safer at Home, here we still are. Home school continues to be a rather improvisational affair in our household. But, the kids are still happy and they are doing so much imaginative play these days that I have to imagine that's building some sort of cognitive skills. We had a stretch of nice weather where I perhaps over-optimistically planted some seeds in our vegetable garden, so we'll see what happens there. If worst comes to worst, I do have more seeds.

Week 349: Remote

Is it me, or is the memory of how we used to live fading a little bit? I ventured out today to do some grocery shopping, and I felt like I could recall a time where I didn't shop as though I wasn't planning to leave the house again for a month. And a time where not everyone at the store wore a mask and stayed as far as possible from everyone else. And a time where the cashier wasn't behind a plexiglass barricade. I feel like I can remember all those things. And yet, also, it seems so distant now.

I definitely remember the kids going to school, but I think they feel about school the way I do about the grocery store. They have some vague notion that school used to be a thing that happened, but it seems distant and unimaginable now. I'm lucky that they are both perfectly happy being home all the time. They have all their toys, books, and art supplies. They have our yard, and their bikes. For them, it seems like a slightly odd summer vacation started a couple of months early. They play their little hearts out and get absolutely filthy every day, sleep hard, and get up ready to do it all again the next day. Our house has experienced some wear and tear, but perhaps on some unimaginable day in the future we will be able to have some of the damage repaired.

We've hit a couple more isolation milestones this week. Our hair trimmer arrived, so I gave Lemon and Papa Bear their first home haircuts. We made our own iced chocolate donuts, which I think provided the kids with further evidence that we may never need to leave the house again. We made a bunch of progress on setting up our new and expanded vegetable garden.

This Friday we have our first telehealth visit with the new doctor. Lemon is continuing to do well, so I think the only real question we have to address with him is what to do in lieu of azithromycin. We wanted to start it to control the inflammation in Lemon's lungs, but at this point even the doctor is willing to concede that Lemon is allergic to it and that it is not an option for us right now. If we really wanted to at some point down the road, we could try to desensitize Lemon, but that sounds like a project for another time. So, if we can't use azithromycin, we would like to know what our other options are.
 Other than that, we are enjoying the ever-improving weather, and trying to imagine what our summer will look like. Somehow, I suspect a lot like our life right now, except maybe a bit hotter. We'll see.

 

Week 348: Boston strong

Another week in this weird life. The kids continue to more or less take things in stride, and with the official announcement that schools will remain closed through the end of the academic year, I guess that's just as well. We are still trying to get the hang of the different online learning tools and apps and classrooms and Zoom and all the rest. We do have something resembling a school routine, at least in so far as that we reserve the hour between 8-9 for trying to coax the kids into doing some of the things that their teachers have set up for them, and then more or less forget about it for the rest of the day. I do periodically feel guilty about not doing everything, but I also feel like they are so young, and all of this is so strange to them. I still hold out hope that normal school will resume some day, and they can get caught up then.I suppose we'll see where the world is in September and take it from there.

Meanwhile, we're on our second go-around with our friend azithromycin. Or, I should say, we were on our second go around. Lemon did the entire "allergy test" portion of the azithromycin ramp-up with no problems. But, then, about a week after starting on the same dose (ie pretty much the same timing as last time), he got a bright red rash on his belly and legs again.So, I don't know what conclusion could possibly be drawn other than that he is reacting to the drug. Trust me, he hasn't been exposed to anything else weird in the past 10 days or so, we've barely left the property! I took a few pictures and will send them over to the doctor to see what he thinks we should do now. Let's just say Lemon's interest in a third attempt at this are approximately zero, and I can't say that I blame him. Of course, I'm not sure where that leaves us in terms of getting the inflammation in his lungs under control. Hopefully the doctor will have some other ideas.

As some of you know, I was supposed to run the Boston Marathon today. In the grand scheme of everything that is going on in the world, it's a small thing to have the race cancelled. There will be more trips to Boston some day, and more races to run. I am still disappointed to not have run it today, and more importantly, to have missed the chance to see and celebrate with all my Boston people. This week, we also made the tough decision to cancel our summer trip to the east coast. We didn't see any way that we would be comfortable putting Lemon (or the rest of us, for that matter) on a plane in July, so we're keeping our fingers crossed that 2021 will be a different kind of year for everyone.

Hope all of you are staying well, and we'll see you just as soon as we can.