Week 240: See reverse

Technically, it is no longer winter. CF is not an illness that abides by such technicalities, however. So, of course, one more cold is winding its way through our house right now. Lemon succumbed first, then Papa Bear. Lime appears to have a mild "fluffy nose," but is in good spirits otherwise. Poor Lemon is coughing his little heart out. We've gone up on our daily vest treatments and down on our overnight feeds, and so far we may be hanging on.






Lemon  was totally exhausted this evening, and of course prefers to sleep with his head buried in a pillow, just the thing when you have a cold. There's no way to convince him to go to sleep propped up, so he was very sad and coughing/crying alternately, but once I held him propped up in my lap and got him to sleep, I stealthy rearranged his pillows and got him into the propped-up sleeping position without waking him. All is peaceful now, although I'm sure I'll have to go in and re-prop later on. Related--technologies for keeping sleeping 4-year-olds propped up? Anyone?


Other than this new cold, we've had a good week, capped by a really fun visit with Uncle Jared. Both kids are finally old enough not to be intimidated by the height and the beard, so they had a great time playing and demonstrating all the new skills they've acquired since they last saw him.




















We got our first official piece of mail this week from the local elementary school where Lemon will be starting kindergarten in the fall. And, even with just that one piece of mail, so many questions. It was an invitation to an orientation at the school, where we are to drop the kids off, let them play and have a snack, and then pick them up. But. Who will do his enzymes at snack time? Are there other kids with CF in our school district? Among his future classmates? Surprise, he has a G-tube, hopefully it won't choose to fall out while he's there...The invitation included a little survey to fill out about your kid, with a question at the bottom followed by a single blank line: "Is there anything else we should know about your child before we meet them?" I used the single blank line to write two ominous little words: "See reverse." I imagine I'll be getting a phone call at some point.

Week 239: 800 liters

This week marks two full years since Lemon had his G-tube placed. I vividly remember giving him a bath on the night before his surgery, looking at him, and thinking, "This is the last time I will wash this perfect little body before it has a weird hole where there shouldn't be one." Aside from that one memory, I barely remember him without the tube anymore, it's as if he's always had it.

It's hard to believe that when he had the tube placed, he was just 25.4 lb, or 6th percentile for his age. Now, he's 41 lb, and in the 70th percentile. He's also grown 7.5 inches in height in that time, going from the 30th percentile to the 70th. So, was it the right decision for him? Yes. I didn't like it at all at the time. Not at all. I wanted desperately for him to be as "normal" as possible. I wanted him to be able to eat and flourish like any other kid. I didn't want him to have anything that would make him visibly different. That obviously was not in the cards.

I remember reading somewhere when he was a baby that even if kids are picky eaters, they won't starve themselves to death. I believe that is almost correct, in that MOST or even NEARLY ALL kids won't starve themselves to death. Mine would have, without a doubt. Part of that is the fact that the deck was stacked against him in a way that he could not possibly understand. What two-year-old has to consume somewhere between 1500-2000 calories just to stay alive? There is no way evolution could have prepared his brain for that concept. And, he was sick all the time, so who can fault him for not wanting to eat, really?

One thing I had not anticipated two years ago is how dependent we would still be on the tube now. I guess I thought that we'd use the tube to supplement whatever he ate by mouth during the day, and use it to give medicines and whatnot. And that without the pressure to eat so many calories, that he would just come around and start eating on his own. Hah. Part of me thinks that having the tube to fall back on enables him to continue being so averse to eating orally. Surely if he felt hungrier he would eat more. On the other hand, I know that he has been hungry before, and that in no way has that been enough incentive to get him to eat. 

So here we are. We have a tall, well-nourished boy who is bursting with energy and intelligence. I try not to let the fact that he is literally comprised of maltodextrin, sodium caseinate, and soybean oil bother me too much. I still live in hope that some day he will learn to love to eat. When we started food school, I set as my goal that I would like him to eat enough calories by mouth every day that we could stop doing a bolus feed in the mornings. In other words, I would like to have confidence that my nearly 5-year-old child would eat a measly 150 calories by mouth every day. We're not there. I don't even see a clear path to being there, but then again we've been in lots of places on this journey where the path forward has not been obvious.

That seems typical of parenting generally, in a way. You face what seems like an insurmountable hurdle. Will they ever poop in a toilet? Will they ever sleep through the night? Will they ever learn to read? You make numerous and valiant attempts to move forward. And, ultimately, at some point, a small miracle occurs, the kid does whatever it is, and on you go towards the next hurdle. I try to be patient. I try to be supportive. I try not to think about when it might be that I will get an uninterrupted night's sleep in my own home. And I remember how grateful I am that we are stuck here instead of somewhere else.

Week 238: Party animals

We had not one, but two dinner parties this week. The first was the annual school pizza party featuring some musical entertainment. As was the case last year, it was way to exciting an environment for anyone to even consider the possibility of eating anything. It was also too daunting for Lemon to try to go down onto the dance floor with the other kids, that is, until Lime agreed to go with him. Then, they both made it as far as the rear edge of the dance floor before retreating to the top of the steps.

The second dinner party featured Indian food at our house, and some very special guests--Uncle Joel and Aunt Donna, whom we haven't seen for just over two years. They live in Maine, and back when we lived in Boston, we used to see them all the time. Now, not so much. This is the part of living in Wisconsin that is still hard--we are so far from so many people, and given the particulars of our travel situation, we just don't get to see people nearly as often as we would like. So, it is especially wonderful when people come to visit us, even if it's just for a few days. We started talking again about our idea of taking the kids to Maine in the summer to enjoy the beach and all the other fun things there. We'll definitely do it. Maybe in 2022.

If memory serves, slightly more food was eaten at the home dinner party, although this was definitely not a banner week for Lemon, eating-wise. He is clearly still working on some kind of cognitive development, it shows in every aspect of his behavior (sigh). His food school teacher said she could definitely see it at their session today. She's shifting focus now from challenging him with new foods, which he's become relatively proficient at, to focusing on eating more bites in a row of the same food. That is still a big hurdle. Nowadays we can almost always get him to take one bite of something (which is huge progress, let's not discount it). Even in this sort of eating dry spell that we're in, he did surprise me yesterday by eating, of all things, a slice of pickled daikon radish. But eating any sort of volume of anything at any given eating occasion? Not so much.

Spring is gradually starting to creep into the air here. It hasn't been exactly warm, but there is some hint around of what is to come. Or maybe I'm just imagining it as I stare at the pictures in the garden catalog that showed up a few days ago. But, the kids can clearly detect it, too, and we've started spending more time outside each day, for which the interior of our house is extremely grateful!

Week 237: Like a lion

At least we're getting a good start on the "like a lion" aspect of March, with several inches of snow on the ground and more continuing to fall as I write this. Lemon seems to have been inspired by this description of March, and is currently working something out. Who knows what. But whenever he is working something out, taking on the next developmental challenge or mastering the next skill, the first thing to go is eating. After so many good weeks in a row, stretches of consecutive days where he at maybe even hundreds of calories by mouth, we are back to the good old days of sitting down at the dinner table and declaring that we are not eating anything. Hooray for the familiar.

At least we've seen the other side of this now, and I can hope that, once Lemon has figured out whatever he's working on, we will get back to where we were, and maybe even move forward from there. We had food school today, which he enjoyed as always, although his food school teacher agreed with me that we're in a little bit of a regression right now. Even though it's only March, they're starting to work on their summer schedule and the schedule for next year. I took the forms. She thinks there are more things that could benefit him, maybe a group eating therapy session in the fall? I trust her judgement, and I also trust my own judgement that there is no way we can possibly manage the transition to full-day kindergarten, the transition to two school drop-offs and pick-ups every day, the daily burden of CF care, AND food school. Something's gotta give here. But what will it be? Instead of dwelling, let's focus on the fact that Lemon spontaneously (and correctly) used the verb "surround" today.

After a couple of pretty CF-intensive weeks, between the advocacy day and the clinic visit, it was nice to have CF take a relative back seat this week. Things will pick up again in that department in the coming few weeks, as I have a few more articles to write for the CF Foundation website, and a team web page to set up for our annual Great Strides walk (how can it be time for that again already)?

In other signs that it is March, Papa Bear's birthday was on Saturday. Cake decorations were selected by Lemon (blue) and Lime (white). As part of Papa Bear's birthday gift, I got everyone in the family a new Wisconsin Badgers T shirt. You will no doubt notice that there is no cute picture of all 4 of us in our shirts on this week's blog, mainly because someone (ahem, Lemon) detected that his new shirt was not in every way identical to his former Badgers shirt (now too small) and refused to wear the new one under any circumstances. Ah well.  Instead please enjoy this picture of a pair of what I'm pretty sure are sandhill cranes (thank you, Google) that flew over me as I was running this past weekend. They sure sounded like they thought spring was in the air!