Monday, May 29, 2017

Week 197: Duck to water

On Wednesday, we at long last had Lemon's feeding therapy evaluation. It had two parts. First, Lemon and I went into a room and had a "picnic" of foods that I'd brought from home, while two therapists watched through a pane of one-way glass. At the outset, I should say that Lemon was not fooled by the one-way glass for an instant. Pretty much as soon as we sat down, he looked at the "mirror" and said, "Is that a window? Is someone back there? I think there's another room over there." But, he wasn't really bothered by it, and ate a very typical snack: enzymes and one slice of orange pepper.

Next, one therapist went into the room with Lemon while I sat behind the one-way glass with the other therapist so that she could learn more about Lemon and his situation. Lemon had an absolute blast, because they were doing all kinds of silly things--blowing bubbles through a straw, making faces in a mirror, drawing on the mirror with ranch salad dressing, etc. He had the undivided attention of an engaging grown-up for about 45 minutes, and was pretty much in his element. Of course, the point of all this was to actually evaluate what his issues with eating actually are, but Lemon certainly would never have guessed that anything serious was going on.

What I learned is that, as I thought, there is nothing mechanically wrong that should prevent Lemon from eating. I'll get a more formal evaluation soon, but the things the therapist hit on were that Lemon doesn't feel like he's "good at" eating, and he doesn't like to do things he's not good at (true!). Also, since he's been tube fed, he really doesn't quite have the connections between feeling hungry, eating something, and feeling full worked out. It sounds like the broad strokes plan is to practice various things so that Lemon feels more confident about eating, and also to rework our tube feeding schedule/volumes somewhat to help Lemon establish the connection between hunger/eating/not feeling hungry anymore. Luckily we have a clinic visit coming up in a couple of weeks so that we can talk to our dietitian and get her input on how we can adjust the tube feedings without losing ground on nutrition.

In other news, Lemon learned how to ride a bike this weekend. Those of you who know me from my cycling past, will appreciate what a thrill this was for me. It really was amazing to watch. Two weeks ago, I took him out with his new two-wheeler and he could only ride at all if I held onto the seat the whole time and ran along behind him. Then, we were busy for a couple of weekends in a row and I didn't have the chance to practice with him. On Saturday, he hopped on the bike and almost immediately could ride short distances without help:

Then, today, after only one more day of practicing:

Monday, May 22, 2017

Week 196: Not a sprint

If CF prepares you for anything, it's being unafraid of the dentist. Lemon was very excited to go for his cleaning because there are toys in the waiting room, and prizes after. He walked right in to the exam room, and got on the table. He very capably advocated for which tool he wanted the hygienist to use to clean his teeth (traditional metal, please, none of this high-pressure water business), and told her when he needed breaks. It turns out eating food actually helps keep your teeth clean, so Lemon had some extra buildup on his teeth due to his preference for not eating, but otherwise everything was fine.

If only CF prepared one for cows. The day after our highly successful dentist visit, Lemon's school had a field trip to a local dairy farm. It started off well enough. Lemon was very excited about riding on the school bus. He was even moderately (if briefly) excited about seeing the baby calves. He was emphatically not interested in feeding any of them from a bottle. He was even more emphatically uninterested in the barn where the cows were hanging out. So emphatically, in fact, that we had to leave the barn and stand outside were we could see the more interesting aspects of the farm (tractors, dump trucks full of hay, front end loader, ATV). The milking parlor was also pretty much a non-starter. He did eat a piece of string cheese at the end of the visit, though, which was reassuring--I was worried that the whole experience might have put him off dairy permanently.

On Saturday night, after the kids were asleep, I slipped out of the house and headed down to Rockford, IL, where I ran a marathon early Sunday morning. It was a great day for it and I set a new personal record, 4:07. I still aspire to get under 4:00 some day, but I put everything I had into the race on Sunday and I'm proud of the result. Honestly I'm looking forward to running a little less for the next couple of weeks and spending time on some much-needed upkeep around the house and the yard. But, don't worry, the next race is already on the schedule for October, so I won't be slacking off for too long.

At long last on Wednesday morning I'll be taking Lemon for his feeding evaluation. Eating has definitely been a bit up and down the last few weeks. Sometimes, he'll have a stretch of days where he eats "so much" (multiple bites multiple times a day) where I wonder if we still need the therapy. And then he'll have other days or weeks where I'm reminded that yes, we really do still need this. I think we're at the point where he's getting maybe 10-15% of his daily calories by mouth, which certainly feels like a big jump from the 0-5% we were getting for some of the winter, but it's not nearly at our goal of 50%.

After some discussion, we've decided to keep going with Cayston for one more week. We'd been hoping to stop after 14 days, but we knew we could only do that if Lemon was really 100% at baseline. And, he's just not. It's impossible to tell if it's still an infection, or if it's just allergies now, or what, which is frustrating. He's definitely much closer to baseline than when we started the Cayston, so I do think it was the right thing to do it. I just wish I knew when it would be OK to stop--with the high pollen counts right now, Lemon could be coughing from allergies for weeks (if past experience is any indication). Treatment is still such an inexact science. So, we'll just carry on for another week and then use our best judgement and hope that we got it right!

Monday, May 15, 2017

Week 195: Mother's day

We had some special out-of-town visitors to help us celebrate Mother's Day this year, namely Uncle Jared and Auntie Lauren. The kids were beyond thrilled to see them. So thrilled, in fact, that they both were essentially unable to sleep between Saturday morning and Sunday afternoon. That is one way to make the most out of a a short visit, I suppose. We didn't even do anything objectively exciting. We went on walks, played around the house and in the yard, and ate various meals, including of course Mother's Day brunch (featuring a rhubarb pie made with rhubarb from our back yard!).

A major highlight of the visit was that on one of our walks, we went to a yard sale and acquired numerous "new" toy vehicles. These new acquisitions may have contributed to the inability of various people to sleep effectively. One of these vehicles is a real gem, an old metal Tonka pickup truck carrying a camper with a door that opens. When I picked it up, the guy selling it was very skeptical about letting me take it, and explained to me (while eyeing Lemon and Lime with deep suspicion) that this was a valuable collector's item in excellent condition and was worth way more than the price he was charging for it, etc. I hope he will take some solace in the fact that the kids love it. Toys are meant to be played with, right?

In any case, we enjoyed a wonderful if too-brief visit and even managed to get a semi-decent family portrait.

The latest round of Cayston seems to be working. Lemon's cough has mostly dried up, so I'm hopeful that we will be able to stop after 14 days. We've gotten more used to adding the third therapy session in the middle of the day, so it doesn't feel quite as disruptive as it did before, but with the weather being nice now it does seem like a shame to keep Lemon indoors for an extra 45 minutes a day.

Many of you may remember that a few months ago I engaged with the CF Foundation to develop some scientific content for their website. I'm happy to report that, after a few logistical hiccups, that project is finally getting off the ground and I hope to have some content to share with you soon. It's funny that I'm more nervous about the draft that I've produced for them than I am about the myriad things that I write every day for my "day job." I really want this piece to be the first of many that I do for them, so a lot hangs on it. The deadline is approaching, though, so pretty soon now I'm going to have to stop fiddling around with it and send it in!

Monday, May 8, 2017

Week 194: Plane home you

I'm glad to report that I left the state for two nights and everyone survived to tell the tale. It makes me think I should go away more often, but only if it involves something other than a professionally mediated conversation with my coworkers about our respective personalities (don't ask). In any event, I definitely enjoyed the trip and the feeling of freedom that came with being responsible only for myself for a couple of days. It seemed like the males of the family were glad to have me back, though. In fact, Lime came the closest he ever has to uttering a sentence. When I came into his room the morning after I got back (I'd arrived after he was already asleep), I pulled him out of his crib and as we were sitting in the still-dark living room, he said "Plane. Home. You!" which does capture the scenario pretty accurately.

Papa Bear and I also enjoyed a little kid-free time together this weekend, taking part in our annual Great Strides walk. Thanks so much to all of you who donated--we ended up being the #4 team at our walk this year, which is a nice accomplishment, although as I say every year, _next_ year will be the year that I actually get serious about fund raising. Some day I will have more free time, right? I think I've been saying that about every year since I was a sophomore in college. But I continue to be optimistic.

In case we needed a further reminder that May is CF awareness month, today we decided to bite the bullet and start another course of Cayston. Lemon is still really well, which is the puzzle of this cold. He's not coughing much if at all at night, and he doesn't have a runny nose or sneezing either. But there's this lingering cough. Not too frequent, maybe a couple of times a day, but it's a productive cough and it's certainly not his baseline. And we seem to be kind of stuck there, despite our best efforts with increasing his treatment to 3 times per day. So, I reached out to his nurse practitioner today, and she agreed that it sounded like time to start up the Cayston again. Hopefully since he's not that sick, we'll be able to get away with just 14 days this time.

We did have one little advance, though, which I'm excited about. When I was unpacking a set of new nebulizer cups (they need to be replaced every 6 months or so), Lemon started asking me about the mouthpiece that came in the package. I explained to him that that was what grownups used to do their treatments, instead of the mask, and that got the idea in his head that he wanted to do it that way, too. The Cayston provides a great avenue to learn how to do the mouthpiece, since the treatment time is so short. So, when the time came to do the first Cayston treatment today, I gave Lemon the nebulizer with the mouthpiece attached and he pretty much ran with it. I feel like he gets a lot more of the medication into his lungs that way, since there isn't all the leakage like there is around the edges of the mask. It certainly says something about your perspective as a parent when you're remarking to yourself "Oh, he's growing up so fast" because he's able to do his nebulizer treatments like a grown up.

But, in more typical and exciting parenting news, look who got his first real two-wheeler bicycle!

Monday, May 1, 2017

Week 193: Don't draw on the floor with ice cream

We've had a few unseasonably cold days of late, as if to remind us that spring is not an absolute, but rather a transition. And that unseasonably cold weather has been accompanied in our household by a spring cold. At first, we thought/hoped that both kids were just struggling with allergies a bit more than usual, but over a few days it became clear that there was something else going on. As is now typical in our house, Lime has a runny nose and a bit of a cough, but is feeling fine and eating everything in sight. Lemon, of course, has much more of a cough, especially at night. As we were reminded in dramatic fashion on Thursday night, night-time coughing and night-time tube feeds are not compatible. So, we've had to dial back from our usual 3 cartons of formula a night to one. That, in turn, has had the inevitable consequence of weight loss. It is still amazing to me how fast Lemon loses weight. He normally weighs about 38 lb now, and as a result of cutting back his tube feeds for 4 nights, he lost almost 2.5 pounds. Just like that. Poof. Gone. Some of that was surely water weight, but some of it wasn't, and now we will once again have to fight our way back to where we were before, once this cold is over.

What is interesting about this cold (although I am afraid of jinxing it by writing this) is that I am starting to become optimistic that we may kick it without resorting to antibiotics. We increased his airway clearance therapy to 3 times per day instead of two, and went up on Flonase as well. And, gradually, the cough seems to be getting less and less frequent. I'm sure things could change again at any minute, but for the moment I'll just say that I'm grateful that he hasn't had to miss any school, and that we can at least have this bit of hope that we won't need to go to antibiotics every single time he gets a cold.

Another thing we've noticed with this cold is that Lemon's behavior has been kind of off the hook. Probably still within the normal range of behavior for a 3 year old boy, but rather to one end of the continuum. I kind of think it's because he's hungry all the time, but it's hard to say. We've done our best to offer all kinds of tasty things in the hope of getting him to eat by mouth during the day some of the calories that he isn't getting through the tube at night. For instance, we offered him chocolate ice cream, which he generally likes. But, this time, he decided to use it to make a mural. With his feet. On the kitchen floor. In about 0.74 seconds. Anyhow.

Early tomorrow morning, I will depart for a two-day trip to Denver, my first two consecutive nights with no children in about 3 years. I'm a little nervous about it but I'm sure the boys will be fine. Papa Bear has the Domino's Pizza number at the ready, and knows the boys' routine inside out and backwards. The rest of our care team is standing by to help make sure things stay more or less on the rails. With any luck, I'll come home Thursday night to a couple of boys who have kicked this spring cold, and a husband who doesn't try to make a break for it the second I walk in the door. In the mean time, I'm looking forward to seeing my coworkers in person, having some grown-up conversation, and getting a couple of nights uninterrupted sleep. Who knows, I may even get to go running in the mornings--now, that would be truly decadent.