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!