Monday, September 25, 2017

Week 214: Conked out

I should have known better than to title last week's post "The unexpected." It just invites things. I suppose I could just as well have entitled this week's post "The foreshadowed," but my maternal grandmother was particularly partial to the phrase "conked out," and it's equally fitting.

So, here's the foreshadowing. Anyone who knows Lime well knows that one of the great sources of joy in his little life is the consumption of an afternoon Popsicle or three while sitting on the chairs in our front yard, watching various vehicles roll by our house. Because of his inordinate fondness for Popsicles, we noticed a disquieting trend. On some days, the Popsicles were not adequately frozen. At first, we attributed this to the fact that there are lots of people in and out of our house every day, some of whom may not be fastidious about closing the refrigerator and freezer. This list may include Lime himself, who will, in a desperate attempt to reach his Popsicles, pull back on the freezer door with such vigor and abandon that he ends up falling over backwards.

But, as the week wore on, it became increasingly clear that some more sinister force was at work. We reluctantly came to the conclusion that our refrigerator had, in my grandmother's words, conked out. This was of particular concern because at any given time, our refrigerator contains a value equivalent to several refrigerators' worth of prescription medication. So, one evening when the temperature in the cabinet had reach 48F and showed no signs of going back down, I called our reliable hero, Nona, who came over to pick up our stock of medications and perishable foods.  Just in the nick of time, too, as that evening marked the last 24 hours of our refrigerator's useful life.

I then spent a great deal of time on the internet, reading reviews, checking and re-checking measurements, searching for sales, performing comparisons to see which vendor could get us a new unit the most quickly, and so forth. In summary, we are living out of a cooler packed with ice on the kitchen floor, but with any luck on Thursday we will be back up and running with a new refrigerator that has the bonus feature of actually staying cold.

All this shenanigans has occupied what little remained of my available brain cells. In fact, I've been so distracted by the whole thing that I completely forgot to take Lemon to food school this afternoon. He has a clinic visit coming up on Wednesday, so I'd been devoting my mental energy towards not forgetting that, and making sure I was writing down all the questions I want to ask at the visit. And thus, food school fell through the cracks. There is now a weekly reminder set on my phone, and I am really hoping to have those neural pathways back starting next week.

I feel a little silly writing this whole post about a malfunctioning refrigerator right now. Yes, it's a pain, yes, it's disruptive, yes, it's money we weren't planning on spending in this way and at this time. But on the other hand, we are so fortunate that that is all it is. Unlike our fellow Americans in Puerto Rico, we have power, we have a functioning infrastructure, we can get ice, we can get more food, we can get more medicine, and we can get a new refrigerator. So, please consider sending a few bucks their way. There are a number of organizations, like this one, that are helping out there with relief efforts that could use your assistance. And hey, since tomorrow is a day ending in "y," maybe pick up the phone and let your senator know that you like having access to healthcare. Couldn't hurt.

Monday, September 18, 2017

Week 213: The unexpected

Parenting keeps you on your toes, no doubt about that. Just when you think you have something figured out or know what to expect, you discover that you were, in fact, wrong. Take, for example, what I had always imagined would be true about sleeping. I had a notion that I would perhaps not sleep ideally well while pregnant. I had also heard repeatedly that infants do not sleep at convenient times. And I had heard that sleeping through the night was not an event, but rather a process, and that the process would be considered to be well under way when the child performed the miraculous feat of sleeping from 11pm until 5am. But, in all the things I'd heard about sleeping, I did not hear messages about not sleeping when a child was say 2 years old. Or 4 years old for that matter. Perhaps the people who preceded me into parenthood realized that the survival of the species was contingent on them remaining silent on these points.

Well, I am now sufficiently sleep deprived to let you in on a secret from the land of having a two year old and a four year old: I have not slept until (not past; UNTIL) 5 a.m. more than 5 times since June. And it is starting to take its toll. To a very large extent, this state of affairs has been driven by Lime and his accursed molars, two of which remain lost but not forgotten somewhere in his upper jaw. He is gnawing and drooling as though his life depends on it, and still no teeth. These past few days, though, Lemon has realized that now there are things happening in our house at 4am, and being loathe to miss out on any action, has decided that he too must take part. I'm glad I have so many of the kids' favorite books memorized, as that makes it much easier to read them with my eyes closed...

Through all the exhaustion, though, the kids still find ways to make it worth it. For instance, today at food school, Lemon had a semi-accident (made it to the bathroom, but not quite soon enough or with enough control). So, when we got home, he had to change clothes. He's been able to get out of his own bottoms for a long time, but still kind of struggles with shirts. So, he slipped off the wet bottoms, refused my help with the shirt, and then, with the shirt off of his body but still stuck around his head like a turban, and without a trace of irony, he announced "See how grown up I am now?"

So, yes, my love is unconditional. I still find that whole scenario hilarious. But, just in case the kids are reading the blog, I will also emphasize that my love would still be unconditional, and I would still find them hilarious, if they slept until the decadently late hour of say 5:30. Also, I do not hesitate to point out that if they keep up their current routine after the clocks fall back an hour, they will have to start sleeping in the garage.

Monday, September 11, 2017

Week 212: On its head

To everyone's amazement, we made it through the first week of school. A big success from our first week is our new morning babysitter, who has rapidly become a favorite of the kids, taking them on all sorts of adventures in the wilds of our neighborhood before school. Predictably, this leads to some reluctance to actually leave for school, but we're working on that.

The first day of school for both kids was Wednesday. Somewhat to my surprise, Lemon was really hesitant to be dropped off, despite never having had a single difficult drop-off last year. He's been a little teary and clingy every morning so far. I was worried that Lime would actually be the harder one to drop off, being more of a Mama's boy by disposition than Lemon ever was.  And yet, on the first day, he saw his classroom, recognized it from orientation on the day before, and walked right in, leaving me standing in the hall in shock. And so it's been every morning since. I hear this is a common "second child" phenomenon, but whatever it is, I'll take it! At the end of the day, it's a bit of the reverse--Lime is exhausted and eager to come home, whereas Lemon, having found his footing, is having too much fun with his friends to leave.

Of course, every CF parent's big concern in the fall is the return to a classroom fill of disease-riddled vermin (ahem, I mean fellow scholars). We are apparently getting the school year off to a flying start, with both kids having come down with a cold after just 3 school days. Lemon was very sad on Saturday, full of congestion and general woe, but his spirits were better on Sunday and today, although he is of course coughing up a storm. We've gone up on PT and down on tube feeds in an attempt to maintain some sort of equilibrium and hopefully avoid a round of Cayston. Although, we haven't done any antibiotics at all since May, which is a great stretch for us.

At least this early cold has given us a good test case for how we will fit in 3 sessions of PT with our new weekday schedule. The answer, at least based on today's experience, is barely, but I think it's doable. Mondays are especially tricky because we now have "food school" on Mondays at 1, so fitting in PT between getting home from regular school at 12 and leaving for food school at 12:45 is tight, to say the least. It does seem like we are making progress at food school, though, so I'm committed to stick with it at least through the fall, with the hopes that maybe we could "graduate" in December (which is conveniently around the time that we will have completed the 20 visits that our insurance agreed to cover).

 I'm sure in another few weeks this schedule will feel normal and I will have forgotten about all previous schedules, but for the moment it really does feel like we turned our entire household on its head. Lemon decided to take this to a very literal level over the weekend by tripping on the sidewalk and somehow managing to land mostly on his nose and the left-hand side of his face by his eye, such that everyone I've seen with him today has been asking me what happened. At least at this point I'm used to accounting for a child with obvious facial injuries. With any luck, in the coming weeks the schedule will settle down, the cold will go away (please!!!), the scrapes will heal over, and we'll be on our way into fall.

Monday, September 4, 2017

Week 211: Laborious

The summer has drawn to a close. We are about to completely upend what has been one of our more stable child-care arrangements and embark on something completely different. On Friday, we said goodbye to Rose, our morning nanny who has been with us for over a year. Tomorrow, we say good morning to Robert, a life guard and swim instructor who will be running the kids ragged between 7-8:30 every morning so that I can get a jump-start on my work day. Starting on Wednesday, I will then load both kids into either the bike trailer or the car, and take them BOTH to school. Five days a week. Amazing. We thought this day would never come, and now it is here. Of course, they're still just going to school in the mornings, so at 11:45 I will load both of them back into the conveyance of choice and return them home to our new afternoon nanny, Irma. And this is how we plan to survive the next 9 months.  It sounds sort of complicated even to me as I write it, but then again we have been living with complex, multi-player childcare arrangements for 4 years now, so why not just keep going.

Thanks to Lemon's belief that the scale in the master bathroom is a very exciting thing to stand on, I can report that his weight has continued to climb back up since we resumed the higher volume night-time feeds. He's even been eating more by mouth this past week (including a remarkable 75 bites of food at food school on Tuesday!) so I have some vague hope that perhaps the food school is helping and we are making progress.  Or it could be a random uptick like we see from time to time, it's impossible to tell at this stage, but here's hoping he keeps it up. I feel like my main goal at this point is to get to a place were he is eating about say 300-500 calories per day by mouth. That would be huge, because if he could do that we could eliminate the morning bolus tube feeding, which no one likes terribly much.

I should have known better than to mention Lime's new predilection for sleeping past 5 a.m. in writing. No sooner did I do so than he woke up at 4:30 for a few days running. And then, another molar emerged. So the two bottom ones are in. I thought then I might get a break, and I did, one glorious morning of 5:15. And then back to 4:30 today, so maybe those top two are going to come in now and then we can be done with this. I have to imagine (hope) that once he starts school he will be so tired in the evenings that he may sleep a bit later in spite of himself.

In honor of the new school year, we also attempted to take a new family portrait, because the kids' school asks that we send one in for them to hang up on a wall with the other families. As with last year, we achieved "mixed" results. By which I mean this was about the best we could do. All of us are present, are looking at the camera, and have our eyes open. That is what counts as a victory around here. 4K and 2-year-old preschool, here we come!