Week 323: Origami pretzel restaurant

Hard to believe, but we had a fairly normal week this week. I took a quick trip to Minneapolis for work, but other than that, everything pretty much just hummed along. Weird. Not that I am complaining. Far from it, I am thrilled!

I am still not quite sure what is going on with Lemon's cough. We are on day 10 of Cayston now. On Friday, I thought he sounded really good, basically at what we think of as his winter baseline, which is some coughing first thing in the morning and sort of aggressive throat clearing throughout the day. Based on that, I was hoping that we would stop Cayston today.

Then, of course, last night and into this morning he coughed quite a bit, which made me think we are not done with Cayston just yet. For both Lemon's sake and mine, I'd really hoped not to do another week of treatments at school, but I don't think we can avoid it in good conscience. We'll need to keep going at least until Friday, which will be day 14, and then see where we are. Have I mentioned how much I wish that there were some kind of objective measure by which we could assess if the treatment we are doing is working, and when we should consider it done? Sigh.

Other than that, the kids and I have been having lots of fun with origami. Lemon brought it up as something he would like to do. I have no idea where he got the idea, but I bought some origami paper and we've had a great time making various things and then decorating them. It's always good to find new indoor activities that everyone can enjoy as we look towards winter. Even Lime is totally into it, although he gets frustrated quickly and likes to have me move things along for him to the point where stickers and other decorations can be applied.









I had Lime's first parent-teacher conference of the school year today. Honestly it feels a bit silly to have one for a four-year-old, but it's good to know that he shows up at school as he does at home: fun, easy-going, silly, and eager to learn things. He is apparently ahead of the curve in terms of words that rhyme, just in case you were wondering. Watch out.


With any luck, things will continue to be normal-ish for another few days, as I'm leaving town again on Friday for a quick trip to run a marathon (everyone needs a hobby). So, if you're in the area on Saturday and want to hang out with a couple of loons, I'm sure Papa Bear would be happy to see you!

Week 322: Triple

Today is a truly huge day for the CF community, as the FDA announced that it has approved the new Vertex triple-drug combination, Trikafta, that will treat the underlying cause of CF in 90% of patients with the disease, including Lemon! The approval is just for people ages 12 and up right now, but we hope that the approval for the 6-12 age group won't be too long in coming. This is the medicine that we have been hoping for since the day Lemon was diagnosed, and the fact that it is here is just incredible. We cannot wait to see what this medicine will do for Lemon, and all the possibilities that it will open up for him. Thank you to everyone who has been with us on this journey, this is your victory as well as ours.

You can read more of the details in Vertex's press release, which can be found here.









We had the honor this weekend of meeting Gunnar Esiason, an adult with CF who is a well-known voice in the CF community, and is the son of Boomer Esiason of football fame. He was the keynote speaker at our clinic's annual Family Education Day, which was Saturday. It was, as always, a good chance to get an update on what's new at our clinic, in the research world, and most importantly to connect with other people in the community that we see far too infrequently. We all share the same struggles, and it's so important to all of us to talk to our fellow travelers from time to time.



In CF news that is closer to home, we decided to go ahead and do a round of Cayston. That cough never really quit, and Lemon definitely seemed more and more exhausted and not himself. I think it was the right decision, he seems to have perked up considerably and the cough is gradually fading. With any luck we'll be able to just do 10 days worth and then put this episode behind us. Winter is coming, after all, and we need to go into it as healthy as possible. Speaking of, did you all get your flu shot yet?

Week 321: Counting by zeros

It's good to be home. Although I was traveling on my actual birthday, we managed to have a very nice birthday observed once I got back, and hard on its heels, our 9th wedding anniversary. So, lots to celebrate. I received a very nice new vacuum cleaner to replace the one that was no longer quite up to the task of cleaning up after certain other residents of my house, as well as many nice books and a few other little luxuries.











I feel like Lemon may finally be hitting his stride on first grade. I haven't heard anything further from his teacher, and his behavior at home has improved considerably. Our new nanny continues to show up and the kids continue to like her, so I'm sure that helps as well. Not to mention how good it is for my sanity to have many days in a row of reliable childcare.

Lemon has made pretty remarkable strides with his reading in the last couple of weeks. Which reminded me that when he was a toddler, he would go through periods of being rather more difficult whenever he was on the cusp of some developmental breakthrough. So I kind of wonder if that was part of what was going on here. Because this afternoon he came home from school and curled up peacefully in a chair to read for over an hour--not just look at the pictures, but really read the words and try to sound out the ones he didn't know. Whose child is this, anyhow? I'll take it.

Then there was the lingering issue of Lemon's cough. I have another work trip coming up in a week, so I looked at the calendar and realized that if we were going to squeeze in 10 days of Cayston in between trips, we'd better start on Friday. Lemon was still coughing so I went ahead and got out all the Cayston stuff and sterilized it. And then, he started coughing less. Of course. So, after some consideration, we decided to hold off for now. It just didn't seem to make sense to launch into a course of Cayston on a kid who wasn't coughing that much, and who was keeping his tube feeds down. So, we'll see. He's still not at what I would consider summer baseline, but we may have to accept that we're in the part of the year where winter baseline (a little cough, especially in the morning) may be as good as it's going to get. We also restarted Zyrtec on the theory that he might still be allergic to something, and that may have helped a bit as well. As above, whatever it is, I'll take it!

Week 320: Rocky Mountain High

I knew this week’s blog post would be brief since I am currently traveling for work. But, it may be even briefer than anticipated due to some kind of wifi weirdness at the hotel.

In any event, I have marvelous news to report: the newest of the new nannies showed up for day 1 of her second week! A miracle! And an especially good thing since, as I mentioned, I am traveling. The kids seem to really like this one, so I am (very, very) cautiously optimistic that perhaps our childcare woes are behind us for now, and we can finally focus on other things.

The list of other things we need to focus on includes the rather lengthy email we recently received from Lemon's teacher. Since we hadn't heard anything to the contrary, we assumed that things were going fine at school despite what we were seeing at home. Well. As it turns out, some of Lemon's disruptive behaviors have spilled over into the school day. It sounds from her email that he is not nearly as wild at school as he can be at home, but even that more limited degree of wildness is disrupting the other students, and that he is not getting his own schoolwork done. Sigh. So, assuming we really do now have childcare resolved, I need to refocus my efforts on finding a good behavioral health person to help us.

The other issue we need to think about is Lemon's cough. He's had it for several weeks now. It continues to hover just below the threshold where I would normally think to intervene with antibiotics. He coughs, but not all the time, sometimes more during the day and sometimes more at night. He's puked a few times, but not consistently. We also recently decided to stop Zyrtec since he tends to have seasonal allergies for which the season (we thought) had passed. But, we're going to add that back in now to see if there are some lingering allergies that are contributing.

Otherwise, I am starting to come around to the position that we need to do a round of Cayston, just to tamp back whatever this thing is so that it doesn't become something worse. Historically we've been doing Cayston every few months, and it's been way more than just a few months at this point (maybe something outrageous like 6 months?) so we may just be due for a bit of a clean-out before winter gets going in earnest.  In any case, a question that we will think about with greater urgency once I'm back in Madison on Wednesday.

I think that is more or less the news from the home front. I apologize for the lack of photos this week, but as mentioned, the wifi here is less than optimal so just come back next week for a double-dose of cuteness!