Week 319: Revolving door

I suppose you imagine that, when I told you last Monday that the newest nanny (Michelle) was quitting effective Friday, that would be sufficient childcare drama for the week. Hah. On Wednesday afternoon, when I had slipped out for a run, Michelle texted me to let me know that Lemon had thrown a rock at her and called her a not-very-nice name, and that she was quitting effective immediately. Fantastic. Luckily, we were able to draw on our childcare reserve team and stitch together just enough hours to get us to Friday, in the meanwhile interviewing two new, new nanny candidates. During one interview, Lemon bit Lime hard enough to leave a welt, right in front of the candidate. At least we cannot be accused of false advertising, I figure.

Time being of the essence, we picked the candidate we liked better, and arranged for her to do a "trial run" this afternoon. The kids had a blast, no rocks were thrown, and no bad words used. The new nanny even expressed enthusiasm for returning tomorrow. So, although I am now entirely out of the business of making projections into the distant future about childcare arrangements, I am comfortable saying that I should most likely be able to work a regular day and go to my class tomorrow afternoon.

Beyond the childcare mayhem, things continue to roll along. I took Lime to the dentist this week. He was very good and got high marks for his teeth, so that was a success all around. I also took Lemon to the pediatrician for his 6-year-old check-up on Friday. The pediatrician was very impressed with him overall, especially his weight gain (thank you, Boost Kids). I asked if he had any tips in terms of our various behavior issues, and he did forward me the names of a few practices to look at, which I will do in the event that I have a moment's break from looking for childcare. I still hope against hope that maybe all of this is an issue of adapting to the rigors of first grade, and that it will pass on its own in time. Given how long it apparently takes to get seen at any of these clinics, I may have the opportunity to find out, by design or not.

Other than that, we have continued to puzzle over what is going on with Lemon's health. He's had a bit of a cough for almost 2 weeks now. Not quite enough of a cough to be something, but not little enough of a cough to be nothing, either. So, we're stuck in this sort of uncomfortable wait-and-see mode. We are very hesitant to leap in with a round of Cayston, since it is such a production and of course we don't want to use it unnecessarily. On the other hand, if what is causing his problems is a bit of bacterial overgrowth, we want to get in there and knock it back before it causes more problems. 

Unfortunately, there is basically no way to determine what is going on at this point. Given that he seems generally well, and isn't coughing too much even at night, we're holding off for the moment. We've done extra airway clearance therapy the past few days in the hopes that maybe we can shake it out of him and be done with it. Of course, conveniently I am leaving for work trip on Sunday so it would be great if we could at least know what we are doing by then. But, honestly, even if we don't know what we're doing but we have reliable childcare until I'm back, I will count it as a win.

Week 318: Joke

It really does feel like a joke. One of those jokes that is not especially funny the first time, and becomes progressively less funny with each retelling. Like "Ha ha, the nanny quit, we are scrambling." As of today, we are on our second round of this particular joke within the space of a month, and it is emphatically not funny.









The new nanny worked 2 full afternoons, then decided that having just moved here, she had taken on too many hours and needed to work less for a few weeks. So, I scrambled a bit and arranged things so that she could work half the originally scheduled number of hours until she got more settled. That seemed to be fine. And then she texted me this morning telling me that Friday will be her last day. FANTASTIC. The kids weren't even that bad to her! In fact, this afternoon they both fell asleep on the couch. So, I certainly can't blame them this time around. Just bad luck I suppose. That doesn't really help me with the fact that Papa Bear and I both really, really need to be able to work a full week next week.





Thus, I have spent my copious free time today reactivating our ads on the various child-care finding places on the interwebs, and emailing a few semi-stale candidates that we had from one of our old posting, to see if any of them are still looking. But, seriously, this is getting old. And, I really don't like having a revolving cast of characters coming through the house. We all need some stability in our lives, especially the kids, who are now a little confused about who is coming to take care of them and when. Me too guys, me too.

In non-childcare news, everything seems more or less fine. Lemon's cough lingered for several days but seems to have abated on its own. He did have some kind of weird virus or something over the weekend that gave him a bit of a fever, and when he woke up in the morning, in his words, "my eyebrows hurt!" (ie, he had a headache). But, the magic of ibuprofen and ginger ale was enough to restore him and it seems to have passed now.











Lime seems to have gotten used to his longer (5 hour) school days, and boy am I ever glad that I signed him up for the 5 hours given everything else that's been going on. He can recognize many letters and numbers and generally seems to be having a good time. Now, if we could only find someone who was willing to accept (a lot!) of money to hang out with him after school, we'd really be in business!

In the interest of maintaining sanity, Papa Bear and I went out on a date on Saturday night (Book of Mormon!), and I ran a race on Sunday morning. So, at least a couple of things went right this week. Now, we just have to figure out next week and we will be all set!

Week 317: Rubicon

If there's one thing that's even more fun than searching for childcare normally, it's searching for childcare in a hurry. Luckily (?), our first nanny gave notice after such a short stint with us that I still had a couple of active leads from the search that lead us to her. I reached out to them and found a taker, a nice lady named Michelle who drove a school bus for the past 14 years. I am hopeful, though it remains to be seen, that she has the necessary fortitude to handle my offspring. Today was her first day and she when she left it did seem like she would be back tomorrow, although she definitely looked a bit tired. She does share an aspiration with the boys, though: it is her goal to learn to drive a dump truck. So, she may be a kindred spirit.

Having spent all of my available logistics time last week trying to set up childcare for this week, I have not yet had time to look into counseling for Lemon, although that is one of my aspirational goals for this week. In the meanwhile, it does seem like he's settled down at least a little from peak difficult last week to more normal-range difficult this week. Of course, Lime, ever the observant brother, has decided to adopt a few of the more charming difficult behaviors himself. It's great fun.




And, of course, it would not be September without a quick preview of the season that is yet to come. That is to say, Lemon has his first cough of this year's cough season. It started on Friday afternoon but really came into its own yesterday and last night. Today it seems incrementally better, though, so I am somewhat optimistic that this one will just run its own course. Still, it does fill the pit of my stomach with dread to hear him coughing in his sleep, since the memory of all the trouble that can bring is still very fresh.


Which reminds me (and is as good a time as any for me to remind you all) that flu shot season is upon us. Please go get your shot! Lemon will be getting his at his physical in a couple of weeks, and I suppose I'll have to arrange a time to bring Lime out to get his as well. In any event, remember to protect yourself and all the lovely people around you as fall turns into winter. Lime, ever my Sconnie boy, asks on a daily basis when it is going to snow. And although I love winter too, I am happy for fall to linger on for a while yet!

Week 316: Transitions

Ah, the start of the new school year. The moment we had been so eagerly anticipating since around mid-August, when the kids would settle into their new routine, and Papa Bear and I would be able to return to some sort of routine ourselves after a two-week high-wire act of trying to do our jobs while not having full-time child care. Everything seemed very promising. Both kids were returning to the same schools that they went to last year. Lemon even had the same teacher and the same classroom, since in our school the kids and their teacher stay together for kindergarten and first grade. Our new nanny had started and seemed competent and reliable. Everything seemed great. This, clearly, should have been our first warning sign.







Despite everything being set up optimally as far as we could tell, Lemon decided that this would be a good moment to enter one of his "difficult" periods. Well, let's be honest, very difficult. Lots of physical aggression, use of inappropriate language, unwillingness to listen to anyone about anything. Somehow he seems to have managed to keep it together in school (at least, we've received no word of the contrary) but outside of school has been a bit of a rodeo, shall we say. So much so, that our new nanny called on Saturday to give me one week's notice that she is leaving because she can't deal with him. So, I am proud to announce that Papa Bear and I have officially joined the ranks of parents whose children are so awful they drive away their caregivers. Suffice to say, we are very proud.

By which I mean kind of at our wits' end. We've tried every strategy we can think of--rewards for good behavior, different kinds of punishments for bad, talking about what's going on, not talking about what's going on, etc etc. To essentially no effect. At various points in the past when Lemon has become more difficult, we've at least loosely talked about the idea of finding some kind of counseling for him. After all, he does have rather a lot going on in his life for someone who is 6. But, I think at this point I am going to convert that talk into at least some small actions, like calling a counseling practice that the hospital recommended to another CF family in our area.

I'm always reluctant to add more medical stuff to Lemon's already very full slate of medical stuff. I know how important it is to him to feel "normal" and to not have his school days disrupted by stuff that is different than what his classmates have to do. On the other hand, though, I do feel like we're at a point where the current path may not be sustainable or in his best interest long term. I hope that if we can help him find some ways to express his feelings or deal with his frustrations now, that will serve him well as he faces the other challenges that he will undoubtedly encounter going forward.

We are also looking for a new nanny, if anyone has any leads. Preferably someone with a thick skin and a lot of tenacity.

Week 315: First things first

Tomorrow is a big day, the first day of the new school year, with Lime off to 4k and Lemon starting first grade. At least based on our clinic visit Wednesday, I feel like we're in the best position we could hope for to be taking on this new challenge. Over the past 3 months, Lemon has grown an inch and packed on 5lb. Amazing what 4 cartons a night of Boost Kids 1.5 can do. He definitely has the on-board reserves that we wanted him to have going into the school year, and now all we can do is keep our fingers crossed that it is enough to give him the foundation he needs for winter.










Lemon also blew his best-ever PFTs. I don't ascribe much clinical meaning to the numbers yet. At this stage I think the values are all about how well he cooperates. But, this time, in addition to the regular PFT machine, he was offered the option to try another type of test where you sit in an enclosed booth. He really wanted to try it, so he gave the regular PFT his absolute all, and the results showed.





One interesting thing that happened was that, as I mentioned on a previous episode, Lemon had a liver ultrasound over the summer. The notes that we got back electronically said that the ultrasound and elastography read as normal. So, I had expected that the GI doctor would say to try to taper the urosdiol, since that was the plan we'd agreed on if the bloodwork and the imaging looked good. But, instead, what the nurse practitioner said at the appointment was that the ultrasound showed mild fibrosis and that we should continue the ursodiol. I think I was too surprised in the moment to ask any questions, but I did schedule a follow-up with the GI doctor (for January, his next available, sigh) to try to figure out what's going on. Somehow playing "telephone" with a combination of the electronic health records and the nurse practitioner in the middle isn't working.

 My other big goal for the appointment was to begin the process of getting Lemon enrolled in the clinical trial for the new drugs that treat the underlying cause of CF in people with his mutations, since there is a study site in Minneapolis. Our clinic was very supportive and reached out right away to their contacts in Minneapolis. Unfortunately, we got some bad news on that front--the Minneapolis site is already fully enrolled. We did get our names put on a waiting list, but the study coordinator there said our chances of getting a spot are essentially zero. The other sites are too far away from us to be practical. So, sadly, it looks at the moment that we won't be able to participate in the trial after all.

Still, it is great news that the site is already fully enrolled and that the trial is moving along at a good pace, since ultimately the goal is just to get the medication approved by the FDA so we can begin using it. Maybe sometime in the next couple of years? We can hope!

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.