Week 367: Pumpkin life

 Summer really feels as though it is drawing to a close. After a stretch of hot weather, things have cooled off again, with temperatures dipping into the 50's at night. The first few leaves have started to turn. And, school (such as it is) begins a week from tomorrow.

I still feel like we did the right thing, setting up our little education pod, although now I am having the beginning-of-school jitters. Neither of my children is particularly good at online learning. We had a get-to-know-you conference with Lemon's teacher on Zoom and, consistent with past performance, he was attentive for the first 10 minutes or so, and then went to see what treasures he could find under the bed. The schedule our district has laid out is kind of insane-sounding in terms of the amount of time the kids are expected to be doing various Zoom things. 

We met with Lime's teacher this morning and at least she reassured us that for kindergarten, they aren't going to be doing anything close to what the schedule says in terms of screen time. Which, in a sense is good in that I think that is a more accurate reflection of what kindergarteners can do, and bad for parents who had some aspiration of getting work done while their kid was engaged with "school." And I am feeling very lucky that we were able to hire someone to be in the room to help the kids with all this so that we can actually work and don't have to rely on them being welded to their screens all the time.

Meanwhile, we are trying to do some of the regular back-to-school things, like buying new shoes, since both kids had outgrown their shoes from last year. We went to a local shoe store, where almost everyone was masked, and we were in and out of there faster than I would have ever imagined possible. We measured feet, picked out things to try, got the boxes with the right sizes, tried them on, and wore them out of the store (don't worry, Papa Bear stayed behind to pay) within 15 minutes. The kids are so excited about them. It's funny, with our sort of circumscribed lifestyle these days, even the little things like new shoes are a big thrill.

Speaking of thrills, we grew a pumpkin and made it into a pie. A true late summer miracle.

Week 366: Hello seven

And here we are, seven years complete. What a trip it's been. And, what better way to celebrate the journey than a little retrospective.

Zero:

One:

Two:

Three:

Four:

 Five:

Six:

SEVEN!!!!!!

Week 365: Goodbye six

 Amazingly, another year has come and gone--on Wednesday of this week, Lemon will turn 7 years old. what a year he's had. First grade, a doctor switch, a bronchoscopy, a pandemic, an summer spent almost entirely within 3 miles of the house. A gain of 2.5 inches in height and 8 big pounds in weight. A few rounds of antibiotics but no trips to the hospital. All in all, no one could have predicted it and in many ways, a great year.

We'll go into the 8th year of Lemon's life on antibiotics. We started augmentin a couple of days ago. I still think it was the right thing to do, and even after just a few days I feel like that throat clearing is getting less and less frequent. There will never be a way to know if it was the right thing to do or not, but I feel like the little bit of extra effort is worth it, especially with the school year starting up soon.

So, that is the big question: what is our school year going to look like? The answer to that became a lot more clear over the past week. We've hired a teacher to work with Lemon, Lime, and two other kids from Lemon's class as a little "learning pod." They'll still be enrolled in the public school, but they'll do all their learning from home for the entire school year. So, we'll see how that goes. Everything is an experiment these days, but I really like the teacher that we hired and have high hopes that she will be more successful at teaching the boys that Papa Bear and I are. And, hopefully having a couple of other kids around will remind them how to interact with non-siblings.

Other than that, highlights of the week include the discovery of two additional pumpkins on our pumpkin vine, the invention of a new game that involves digging up the dirt under the rope swing using toy trucks, a walk in the rain with umbrellas, and the arrival of a herd of goats to eat up the invasive plants in a park near our house. And, unbeknownst to Lemon, the wrapping of a giant mountain of Transformers, Lego kits, and books that will magically appear from the basement on Wednesday morning. 

Thanks so much to all of you for following along on our little adventures, I can't believe that we've made it through 7 years together. I look forward to seeing what the next 7 will bring. 

Week 364: Staycation

This has not been the summer of travel. Between not being able to fly, not wanting to take on a big road trip, and not having anything much compelling within reasonable driving distance, we've pretty much stayed put. So, it was sort of a shock when I actually left the city of Madison for 24 hours. The rest of the state is still out there, as it turns out. On Thursday evening, Opa picked me up and we drove down to Lake Geneva, about 90 minutes away. On Friday morning, we got up early and walked all the way around Geneva Lake, a distance of 21 miles. Not how everyone would choose to spend their day off, but Opa and I know a good time when we see one. It was a glorious day out and a much needed break after a really busy week at work. Thanks to Papa Bear for keeping the troops in line while I was away!

On Saturday, more "travel," as we went down to Old World Wisconsin for a private tour, which is what they are doing since the park can't be open at capacity. We went to the shoemaker's shop, the blacksmith's shop, and the wagon repair shop, and did a hands-on activity at each. The kids were pretty thrilled about it--what kid does not dream of using a big hammer to strike red hot steel, with their parents' permission, no less? 

In CF news, a little bit of a mixed back. Lemon and I went and did his labs and x-ray. Everything worked like clockwork--why can't they be like this all the time? We went in, got blood drawn, x-rays taken, and a throat swab done, all in 30 minutes!!! Lemon was a champ throughout and enjoyed his McDonald's hash brown afterwards.

All of Lemon's blood work came back normal or near-normal. His GI doc sent me an email that a new specialist has joined the team and he will be transitioning Lemon over to her. So, we have an intake appointment set up with her for October, along with a Fibroscan, which is a different (newer? better?) liver imaging technology so maybe we will get a more detailed picture of what is going on there. Lemon's X-ray looked similar to March, maybe slightly better although it sounds like all of this is a bit of a judgement call. His culture came back with two bugs that he's grown before. But, usually we only see one of them in the culture and now the second one is there as well. 

So, between that, the x-ray, and the fact that he's been a little congested/throat-clearing of late, we decided that it might be time to do a quick course of antibiotics, to see if we can't tamp things back down a bit. He has been antibiotic-free since March (!) which is about as long as he ever goes between courses, and we'd like him to be in top form for the start of the school year. We decided to go with an oral antibiotic, augmentin, since that is both easier on Lemon than the inhaled and also more effective against one of the bugs. So we'll see. Doing the antibiotics is neither the obviously right thing to do, nor is it an obviously wrong thing to do. So, as with so much in CF, we'll give it a try and see what happens.

In domestic developments, we are one step closer to setting up a home-school type arrangement for the boys and a couple of their friends, more details to follow soon but I am growing increasingly optimistic that they may learn something in the 2020-2021 school year. And, our new stove arrived today so I once again have an oven that can produce heat.

I mean the home made english muffins and donuts were good, but I am ready for some bread!

Week 363: End of the summer

Hello August. Weirdly, fall was certainly in the air today here in the Badger state, where the temperature never even hit 70. A welcome meteorological reminder that the height of summer is behind us and we are now in the final stretch before fall. Or whatever the season is that follows this one, in these unusual times. 

Tomorrow Lemon and I will set foot in Children's Hospital for the first time since his bronchoscopy. Remember that whole episode? Definitely part of the before times, although just barely--as you may recall it was one of the last "elective" procedures they did in pediatric pulmonary before the shut down. Because of it, unbeknownst to us, Lemon missed one of the last in-person school days of first grade. So, now, we will return at last to have his labs drawn, his throat cultured, and his chest x-rayed. Lemon's doctor is all for telemedicine but thinks it is really important for people with CF to still get cultures done quarterly, so that any new bugs can be caught and treated quickly. I am in agreement with him on that, so it's worth the risk and the trip--the risks associated with not quickly noticing and treating a new lung infection definitely outweigh any exposure risk of being in the hospital for a few minutes. 

Meanwhile, the little events of quarantine life continue. I took Lemon to the dentist on Thursday, and he was happy to just roll along with waiting in the car, wearing a mask inside the building, getting whisked in, doing his x-rays and cleaning, and whisking out again. No cavities, phew, although lots of plaque. Since Lemon still doesn't eat as much as normal by mouth it has a tendency to build up. But, that's what the dentist is for and makes that trip worth whatever risk we're incurring there, I think.

I took the car in for some standard maintenance this morning, since it was due and I'd set up the appointment a while ago. It does seem a little silly since I literally have not put fuel in the tank since late March, during the brief period when gas was $0.99/gal. But, there is the theoretical possibility that we will start driving regularly again and would like the car to be working when we do.

The only unexpected drama this week was that this morning, I turned on our oven to bake something, it preheated normally, I put the thing in, and then within seconds there was a tremendously loud "POP!" followed by that smell of ozone and melted plastic that indicates electronic death. Sure enough, the control panel for the oven had gone dark and could not be revived. As I'm sure my fellow pandemic bakers will understand, this is a serious catastrophe. So, instead of whatever else I may have had planned for this morning, I fired up the internet and figured out who could install a replacement stove the soonest, which turns out to be a week from today. So, no oven for a week, which I just take as clear indication that this week at our house will be the week of the English muffin, the week of the crumpet, and the week of the doughnut.We'll make it somehow.