Week 314: Infinity by tens

There has been a lot of interest in the concept of infinity in our household of late. Is it a number? Is it a concept? Can you be infinity years old? Can you count to infinity by tens? All of these questions take on a whole new meaning when they are contemplated during the nearly infinite number of days that seem to be situated between the end of summer camp and the beginning of the school year.

In the general context of run-up to the school year, we had Lemon's "Ready, Set, Go" conference with his teacher. I emphasized that we were totally ready and set, and that I would be happy for going to commence as soon as possible. Apparently that's still the Tuesday after Labor Day. In all seriousness, though, it was good to meet with her, and I feel very fortunate that our school "wraps" kindergarten and first grade so Lemon will have the same teacher, classmates, and classroom as he did last year. Which also means that I am not at all concerned about how we will handle his medical needs in the coming school year. We have our enzyme plan, and the teacher already emailed me their daily schedule so that when the time comes I can do my whole routine of zipping in and out like the nebulized antibiotics fairy that I always aspired to be.

We also FINALLY managed to secure a new afternoon nanny. Well, maybe I shouldn't get ahead of myself since she doesn't start until Wednesday, but at least in principle she's agreed to join us. At a price. The labor market must be really tight this year, because our candidate (singular) had 5 offers. So, the year will be a little more expensive than we were planning on, but I keep reminding myself that this is the last year that we will have a kid at home for any substantial part of the weekdays. And it will be worth it to have the amount of coverage that we need. Plus, honestly, the nanny probably does deserve combat pay to be in our house all afternoon.

On Thursday evening of this past week, Papa Bear and I attended a new kind of event organized by the CF Foundation, a social evening for parents and caregivers of kids with CF. It was walking distance to our house, and luckily Grandma and Grandpa were still here to watch the kiddos. We had a great time chatting with the other families that were there. One I'd met before and one not, but it hardly matters, meeting other people in the CF community is like meeting old friends, whether you know them or not. There is an instant connection and understanding of the ins and outs of each other's daily lives and struggles. Since someone from our local CFF office was there at the event, it was also a great opportunity to give the foundation some feedback about areas where we could use their help and influence.

Coming up this week is Lemon's next clinic visit. I think we're in a good position, exactly where I'd hoped we'd be at the end of the summer. His weight is good, he's at respiratory baseline, and feeling great. I think at this visit we're doing some new pulmonary function tests (assuming we can get him to cooperate, of course) along with all the usual stuff. I am also going to talk to the nurse practitioner about the possibility of enrolling Lemon in the Vertex clinical trial, and see if she or anyone here has a connection in Minneapolis that I could talk to about it. I know it would be a big logistical burden to participate, but it would also be a huge opportunity, and an honor to pay it forward to the rest of the community, whose participation in trials in the past made everything that we have today possible.

Week 313: We are six

Lemon turns six years old today! I am honestly kind of stunned by this. On the one hand, it feels like an immeasurably long time ago that I had no children, and on the other hand it feels like not that long ago that he was just toddling around. The changes that take place over the first six years of a human's life are staggering. It's also hard to believe that until 6 years ago, CF wasn't part of our lives, whereas now it is something I think about multiple times a day, every single day.









In honor of the passage of all this time, we decided to get the kids their first professional haircuts. I've been chasing after them with a scissors myself since their hair was long enough to cut, and never got them to sit still for more than maybe 120 seconds at a time. Then, Lemon started asking about going to the barber for a haircut so we figured we'd give it a try. And wouldn't you know they sat as still as statues for almost 20 minutes each, obeying every instruction. The barbers both remarked on how amazingly well-behaved my kids were. I guess if you distill an entire day's worth of good behavior down to 20 minutes, amazing things can happen. During that 20 minutes. We will not discuss the rest of the day.

This year's birthday is extra-special as we are celebrating here in Lake Geneva, WI, at a resort we've been coming to every summer for the past 3 years. On top of that, Grandma and Grandpa are here from New York. And on top of that, the kids have gotten so many wonderful gifts--a marble slide set, books, new Transformers (that took the combined brain power and advanced degrees of both Mama and Papa Bear to convert from one form to the other), and on and on. Who wouldn't wake up at 4 a.m. on the day in question in anticipation of receiving such a bounty? Who indeed.

I am also a little amazed that this blog is now six years young. Every Monday for six years, I have sat down in the evening to reflect on the events of the week and share them with you all. Now it's almost as much of a habit as doing respiratory therapy and dispensing medications. I can't really imagine not doing it. CF can be a lonely journey, and knowing that you guys are out there following along each step of the way is very comforting. So, thank you for staying with us for a half-dozen years. I am looking forward to sharing the next half-dozen with you. I have such high hopes for them, for Lemon and everyone else with CF who is waiting for the new therapies that are just around the corner.

Week 312: Boston-American

I am pleased to report that the cefdinir appears to be doing its job, and Lemon's ear infection appears to have receded. We will give him the last dose tomorrow and hope that it doesn't reappear again after that. Meanwhile we are on to our last week of camp (what?!?!) so with any luck no one will come down with any of the various plagues that we've received warning emails about. Of course, on the drive home today, Lime said "Mama, Lemon is licking a rock." Thinking I'd misheard, I said, "Lemon, are you licking a rock?" To which he responded "No, I am putting my lips on the rock, then licking my lips, then putting them back on the rock." Ah. Of course. Well, that approach certainly does minimize the chances of catching who-knows-what from who-knows-where that rock originated.

In other fun car chatter, today Lemon asked me if he was a Boston-American, since he was born in Boston. I am still smiling about that.



We spent this ear-infection free weekend enjoying a visit with Uncle Jared and Auntie Lauren, in from NYC for some midwestern fun. They took the kids on an outing to a local splash pad and McDonald's and lived to tell the tale, a testament to their general fortitude as human beings. We also did all kinds of fun things as a family, including a family photo shoot, so hopefully sometime in the upcoming weeks I'll be able to share some higher-than-average quality pictures of all of us.




On Saturday, Grandma and Grandpa will be arriving from New York for a visit, during which time Lemon will celebrate his 6th birthday. Turning 6 is always momentous, but this year it is particularly important as Vertex is now enrolling people of Lemon's genotype, aged 6-12, in trials of their new triple drug combination! Of course, the nearest site to us is in Minneapolis, but I am planning on calling them this week to learn more about the study and find out if there is any way we could participate. If Lemon could be on that medication during the winter, well, I don't want to jinx anything but a girl can hope, right?

This weekend, we also bid a fond farewell to one of our most stalwart babysitters. You never know who is going to turn out to be a great one, but he truly was. He started taking care of the boys on summer afternoons when Lime was not yet one, and stuck with us until now, watching the boys on Sunday mornings so that  I could get out of the house for my long runs (and Papa Bear could get some work done). The boys absolutely adored him and had so many fun adventures with him. We will miss you, Henry, have a grand time in Spain!

Week 311: Just fill out this form

Hello August. It is hard to believe that Lemon's 6th trip around the sun is drawing to a close, but here we are. This weekend featured the kids' joint birthday party, which they have been so excited about all week. So, naturally, Lemon came home from camp (aka germ nexus of the universe) complaining of dizziness. At first, we attributed that to the fact that he'd forgotten his water bottle so he was pretty dehydrated. Also he chose not to eat a single molecule of his lunch. So, we figured that if we got some Gatorade and food into him, matters would improve. Hah.



He went to bed Friday night only to wake up weeping with ear pain and a fever. So, we gave him some ibuprofen and hoped against hope that it would pass. And, on Saturday morning, he still had a bit of a fever but seemed overall not in such bad shape. Saturday night wasn't that much better than Friday night, unfortunately, and he was still in a lot of pain and feverish on Sunday morning, with the party just hours away. I whisked him off to urgent care where, after using a giant syringe of water to flush his ear so she could actually see what was going on, the nurse diagnosed him with another ear infection--possibly a recurrence of the one he had when he had strep throat a few weeks ago, or maybe something new, who knows. In any case, we switched from amoxicillin to cefdinir, gave him the first dose as soon as we got home from the pharmacy, and gave him a dose of ibuprofen right before the party.

Thanks to the miracles of modern medicine, the party was a big success. The kids, who generally agree on nothing, were in complete solidarity on their cake choice from Costco: chocolate cake, chocolate filling, unicorn design. Done. Lots of friends showed up, and a splendid time was had by all. No one had the emotional stamina to make it much past 6:30 that night, which is always the sign of a good day.






With the memory of the endless summer camp forms still fresh in my mind, it is now time for school forms, it seems. Lime's school is making vague motions towards joining the rest of the 21st century in that instead of sending a thick envelope with those pre-printed forms that you fill out and then retain the canary copy while returning the white, rose, and periwinkle copies to the school, they now send an email with 71 different attachments. These attachments must then be downloaded, printed, filled out by hand with ink signatures, and then hand delivered to the school office. Progress!





Of particular note is the state immunization form, required by the state of Wisconsin for all children enrolling in preschool. It requires an ink signature from the pediatrician. Fine. I called the pediatrician's office, said that I needed the state form filled out for my kid, and asked when I could pick it up. I was informed that I could print off a copy of this (totally standard, state-issued) form, hand-deliver it to the office, fill out the please-fill-out-my-form form, leave these two documents with the office, and they would call me when I could pick them up. Because in the year of our lord 2019 it is imperative that parents spend an adequate amount of time driving around town delivering pieces of paper that contain only information that is also available through our state's online immunization registry. I mean what else would we do with our time. Maybe look for child care, since camp ends in two weeks? But that is a source of panic for another day.