Week 247: Minutes of fame

I believe I have now used up 3 of my allocated 15 minutes of fame. This week, I appeared on our local NBC affiliate to talk about cystic fibrosis and Great Strides. The development director for the local chapter of the CF foundation had reached out to the station months ago, and the anchor of the 4pm news show agreed to have us on for a short segment to publicize the walk. The original idea was that we were going to have 4 minutes, and both the development director and I would appear. Then, the development director had a scheduling conflict that she couldn't get out of, so it was just going to be me. Then, news happened, so the time slot got cut down to only 2.5 minutes, so it was probably just as well that only one of us appeared on the show.

I got to the station about 15 minutes before 4 and was ushered in to the studio. The only mental image I had of a TV studio was the glimpses I'd caught on the rare occasions that I'd watched a live show in the past. Those mental images included lots of people running around, manually pointing cameras and lights. Maybe that's how some bigger studios still do it, I don't know. What I can tell you for sure is that NBC15 in Madison doesn't do it that way. The total list of people on the set for the 4pm news in Madison was myself, the anchor, and the weather guy. There were many cameras and lights, and they did move, but they were all controlled remotely from a big room down the hall.

The anchor was really nice and chatted with me before the show started and through all the commercial breaks. It was pretty hilarious to hear her transition from regular lady-next-door voice to serious news anchor voice and back again from sentence to sentence. Secret information: the weather guy is wearing a jacket and tie, but also sneakers since you can never see his feet. I sat on the interview couch while the rest of the news went on, and then a member of the crew came in and wheeled the couch into position in front of the cameras right before my segment.

You can view the segment here: http://www.nbc15.com/video?vid=482330961

I had practiced what I thought I was going to say, but the anchor hadn't told me exactly what questions she was planning to ask me, so I was caught off guard by a couple of them. And then, just as I felt that I was sort of hitting my stride, the segment was over. At least three different people checked to make sure I'd turned in my microphone, and I went home. Hopefully the segment connected with a few viewers who wouldn't otherwise have given CF or Great Strides a thought, but it's impossible to tell--there's even less feedback than with blogging, where at least I can see how many people looked at the blog each week!

Speaking of feedback, how about heading over to our Great Strides page and making a donation? The walk is this coming Saturday May 19, and we are about half-way to our team goal. At the moment, Papa Bear is ahead of me on fundraising, which is sort of embarrassing (in a good way). So, head on over by clicking here! I'm trying to follow NPR's new model of having the fund drives be really short, so let's make it sweet. Thanks in advance for your support--there is no cause more important to us!

Week 246: Getting oriented

Saturday was Lemon's kindergarten orientation. I was a little apprehensive about it, because he can be pretty shy, but it turned out he was more than ready for it. He was so excited to walk from our house to the elementary school like a big kid, and went off with his teachers and a bunch of kids he didn't know pretty willingly. It helped that there were two kids from his preschool in his orientation group, but he got caught up in the action so quickly that I'm not sure how much it mattered.

His teachers and I had discussed how to deal with snack time, since he would need to take his enzymes before eating. Ultimately, we agreed that I would just slip into the classroom at the appointed hour to give the enzymes myself, since the school needs a doctor's note in order to give medication (the fact that his enzymes are actually prescribed by a nurse will, I assume, be a battle for yet another day). I was a little concerned that he would want to leave with me after getting his enzymes, but that worry was also misplaced, since he was so engrossed in the story that the teacher was reading that I could barely get him to turn his head towards me long enough to actually take the enzymes. So, all that seems promising, and he was very disappointed this when I told him that he had to go to his regular school this morning rather than back to kindergarten.

The kindergarten orientation did raise another issue in my mind, which is whether or not to file a 504 plan for Lemon. A 504 plan is a plan for the school to accommodate students with permanent disabilities. There is no doubt that CF is a qualifying disability, although I never ever in my own mind think of Lemon as disabled. Nonetheless, there are some accommodations that would probably make school easier for him. Another mom that I talked to (whose son has other issues, not CF) said that in her view the 504 was the best communication tool to get the staff of the school on the same page about what the child needs. That way of thinking about it resonated with me more so than thinking of it as a disability plan. So, I guess one project for this summer will be figuring out how to get such a plan in place. 

Lime is continuing to do pretty well with potty training. He was having a hard time doing #2 on the potty, though. It's a very common phenomenon among toddlers, apparently. One bad #2 experience and they resist doing #2, which inevitably results in subsequent bad #2 experiences and away you go down a #2 spiral. I am quite sure that if Lime had been my first kid, I would have been trying all kinds of things involving prunes, bran cereal, copious amounts of water, and endless cajoling/praising/bargaining. But, guess what, Lime is my second kid and my first kid has CF and has been on a staggering array of medications since he was 10 days old. So, I looked at Lime's situation and thought, I bet there's a chemical that can help with that. Sure enough, there is, and it comes in watermelon-flavored tablets that Lime finds quite delicious. And thus, we broke the #2 spiral. Better living through chemistry, people.

Speaking of better living through chemistry, let's talk again about drugs that treat the root cause of CF. Right now there are three on the market--up from zero when Lemon was born. Unfortunately, none of the drugs that are available now will
work with the combination of mutations that Lemon has. But, good news: medications that will work for him are in Phase III clinical trials, meaning they could be approved in the next couple of years for adults, and a couple of years after that for kids. We are so close to something that could fundamentally change Lemon's life trajectory, but we need to complete these critical trials to know for sure that these medicines will work well. Donations in any amount will help make sure these medicines are ready for Lemon to take, hopefully before he finishes elementary school. We are so close--help us get to the finish line! Please click here to visit our team page and help us achieve our fund-raising goal before our walk on  May 19!

Week 245: Only one in the world

I've been thinking a lot this week about the way that CF isolates the people it affects. People with CF can't be around each other, because of spreading lung infections from one person to the next. For the parents of young children with CF, that basically means we can't be around each other, either, because it's a bit of a production to arrange for the kids to be somewhere else in order for the parents to get together. That means that you are essentially cut off from the very group of people who understand you and your situation the best.

















Take one of my best CF mama friends, for example. We've known each other for about two years, and she lives just across town. In that time, we've gone out for coffee once. Gone out for lunch once. Seen each other in person at CF-related events maybe four or five times. We text all the time, checking on how the kids are doing, who saw which doctor or tried what treatment, and venting about all the things that make life with CF complicated. I may be dating myself here, but although texting is great, it is not exactly the same thing as in-person interaction.

Fast forward to this past week, where unfortunately her CFers were admitted to the hospital for two weeks after a rough winter. This means my friend and her husband are basically being held prisoner 3 miles from my house, making it easy for me to pop over and visit them when my kids are asleep. It's been strangely wonderful, finally having it be easy to see these friends, even in really the worst of places. I've been to see them three times already, and am hoping to sneak in another visit or two before they go home on Friday. Who knows when we'll have a chance to drink cocktails together again once the kids are discharged? Given the circumstances that have let us get together so easily, I hope not soon, but it I will miss this.

Lemon is just starting to figure out that he has CF. He's known the words for it for a long time, but he couldn't really comprehend what it meant. Then, this week, he asked me "Mom, am I the only person in the world with cystic fibrosis?" I assured him that he wasn't, but I don't think he really believed me. I hope that as a child of the digital era, he will be able to develop and nurture friendships with other people with CF, even though they can never meet in person.

Just in the nick of time, with CF awareness month beginning tomorrow, I finished setting up our Great Strides team page, which you can view by clicking here! We participate in this walk every year to raise money for CF research. So much progress has been made every year since Lemon was born, and this year promises to be no exception. In fact, drugs that could treat the root cause of CF for Lemon are now entering Phase III clinical trials! Not only that, but many other key developments in things like antibiotics, drugs to help clear mucus from the lung, and many others, are advancing as we speak. You can see the CF Foundation's clinical pipeline here. If that doesn't get you excited about the future, I don't know what will. And who doesn't want to be part of a winning team? So, for Lemon, and for others like him, please consider making a donation to the CF Foundation. His life depends on this research getting done, and getting done quickly! And, if you're in Wisconsin and want to walk with us, please reach out! We'd love to have you there in person on May 19.

Week 244: Dinner with Visigoths

Spring has finally arrived in Wisconsin. After our little blizzard last week, things warmed up quickly and the plants seem to think it's the real deal this time. So much so that they have begun their annual pollen festival. Like clockwork, Lemon began coughing almost immediately. At least we've been around the block a few times now, so we have fully engaged our allergy protocol: twice daily Zyrtec and Flovent, running the air purifier all night while sleeping, and nasal saline. So far, it seems to be working, we beat back the coughs pretty quickly. Hopefully the regimen is good enough to get us through when the real pollen onslaught begins in another week or two.

It seems like things are moving forward for my big appearance on local TV next week. I remember being told something about 15 minutes of fame, but apparently we are getting 4 minutes. Still, publicity is publicity. I'm meeting with the development director of our local CF Foundation chapter later this week so that we can rehearse. If you only have 4 minutes, you don't want to waste 30 seconds of it saying "um."











Lime has continued to do very well with potty training. He loves his undies and now has started protesting about putting on a diaper at bed time because it feels too bulky. Tough luck on that one, pal. I do enough laundry as it is.











The kids have been absolutely drunk on spring fever the past few days. It's been fun to watch them rediscover the joy of going outside with just a pair of shoes and a light jacket (or no jacket at all, these are Sconnies after all). They are in constant motion when awake, and are completely exhausted at bed time. Which has its advantages for me since Papa Bear is out of town at the moment.







Running the CF routine solo makes you realize how truly tremendous it all is. When Papa Bear is here and we are splitting the work, it doesn't seem like too much. A few extra things here and there, yes, but not unmanageable. Solo, though, you realize the true extent of it. This morning, I administered a breathing treatment and 8 different medications before I'd even had my first cup of coffee. I realize in retrospect this may not have been advisable and I will be putting the kettle on earlier tomorrow.




This week I also spent some time visiting with some fellow CF parents who are stuck in the hospital for a 14-day admission with their two girls who have CF. This winter wasn't kind to them either, and unfortunately the girls were unable to shake off its effects without a two-week course of IV antibiotics. It's a stark reminder of how vulnerable our kids with CF are. The therapies have come such a long way, but we are by no means where we need to be yet. There are some really exciting clinical trials coming up this year, and I am still hopeful that by the time Lemon is in early elementary school, there'll be a new medication for him to start on that treats the underlying cause of CF.

So, let the record reflect that this will really be the week that I set up our Great Strides page, and I'll be back at you next week with a description of some of the exciting research that's in the pipeline for 2018, and more details on how you can get involved!

Week 243: Pooptastic

This past week I bit the bullet and made a bunch of plans for the kids' summer. I'd found a summer camp program that sounded good for them, but hemmed and hawed about it for a while because it was a little farther from our house than I would ideally like, and they need the kids to be fully toilet trained, and I hadn't heard back from them about whether they'd be comfortable giving Lemon his enzymes. But, eventually, I decided I had to either decide or have it be decided for me by all the spots filling up, so I signed us up.










The logical follow-up was to toilet train Lime, which we decided to take on this weekend. I have to say, Lime has really risen to the occasion. He was so thrilled about his undies that he more or less got the hang of matters right away, and with a lot of praise, bribes, and general encouragement has so far managed to keep accidents to a minimum. I even sent him to school in undies this morning, and he returned from school wearing the same pants as when he left the house. Success! I don't attribute this to any particular toilet-training skills on the part of myself and Papa Bear, just that Lime was more or less ready and we showed him the way. So, that's handled. Next up, I will visit the school and talk to them about enzymes and whatever else we need to arrange. But, that is a task for some other week.

After much hesitation, I also decided to sign Lemon up for food school during the summer session. I definitely feel like we've hit a plateau. He's acquired a bunch of skills, which he either chooses to apply or not as he sees fit. He still doesn't eat much, and isn't generally interested in eating or food at all. He's happy to do things at food school to please his teacher, but that still doesn't translate over into what he does at home. And, I think his teacher's noticing the plateau as well. She's trying some new things as well, but the report that I get after each lesson is about the same. So, this may just be what we can accomplish at this time in Lemon's life. But, I didn't feel right about not giving him a few more months. Once kindergarten starts in the fall, there is no way we can do food school anymore, so I felt like it was important to give him this last opportunity to pick up anything else he could possibly learn before we launch him into the world of elementary school.

 Health-wise, things seem to be good at the moment. Of course, even with a short illness, Lemon lost a pound or so, but I think we've got it back on him now. He's been off Cayston for a week and has stayed at baseline, so it seems like the two-week course was enough. Before it snowed, we were thinking that spring was imminent so we went ahead and activated our spring allergy protocol (Zyrtec once per day, increase Flovent to twice per day), so I guess at least we'll be ready if/when the snow ever melts and things start blooming.

Other than that, I'm nearly done with my next set of articles for the CF Foundation's website, which means that soon I won't be able to procrastinate any longer and will actually have to get going on fund-raising for our Great Strides walk...I'll start as soon as it actually looks like spring around here!

Week 242: Sunshine state

In case anyone had any doubts about Papa Bear's capabilities (which, if you've been reading this for any length of time, you really shouldn't), I went to Florida by myself for 4 days and everyone survived. All the regular treatments, medications, and tube feeds occurred on schedule. All the different pieces that needed cleaning and sterilizing every day got cleaned and sterilized. Every dose of Cayston save one was delivered on time. Baths were given nightly. People ate things. No one got scurvy.

I had a good trip, and it was certainly nice to have a break from the daily routine. I felt a little like a lizard on a rock, soaking up some much needed warmth and rest after a long winter. The first three days of the trip were for a work conference in Orlando. After the conference ended, I rented a car and drove to Miami to meet up with a dear friend who lives in Germany but who happened to be on vacation in Florida at the same time as my meeting. I hadn't seen him since he made the trek out to Madison to see us almost exactly 3 years ago, when I was pregnant with Lime. It was wonderful to see him again, and we had a great time reminiscing about all the adventures we've shared over the years, beginning when we met by chance at a campground in Greymouth, New Zealand, in 2001, which feels like two lifetimes ago at this point. It's good to be reminded that friendships can crop up anywhere, and that the best friendships endure the tests of time and distance; tests to which I seem to put all of my friendships these days.

Back on the home front, we're a day away from finishing this round of Cayston. Lemon seems to be all the way back to baseline at this point, so we'll stop at 14 days and hope that that is enough to see us through until spring gets started in earnest. We were scheduled to have a follow-up appointment with the GI specialist who prescribed our ursodiol next week. As I thought about the appointment, though, I really couldn't see any purpose to it. Lemon's last round of liver labs were in the normal range, and we won't draw any new labs until May. He hasn't grown enough to require a dose adjustment, and honestly even at our first visit, the doctor didn't do much besides press on Lemon's belly once and then calculate the appropriate dose of ursodiol based on his weight. I sent the doctor a message today asking whether he thought we still needed the appointment, and he agreed with me that it wasn't necessary, so we're cancelling it. Every healthcare encounter is an opportunity to pick up some nice bacteria from inside the hospital, so it's nice to have a painless way to eliminate one extra chance for exposure.

In other CF news, it is likely, but not definite, that I will appear in a brief interview on the local Madison NBC affiliate next month to raise CF awareness generally, and also to talk about the upcoming Great Strides walk. More details on that as they become available. I've never been on TV before so it should be an interesting experience. And yes, I am going to get right on that whole thing about setting up our team's Great Strides page!

Week 241: Variations on a theme

Winter would like to emphasize that it is not done with us yet. To wit, it is currently snowing, and we are on Cayston once again. I had a feeling it was coming even as I was writing last week's post (the Cayston, that is, not necessarily the snow). As a CF parent, you become unbelievably attuned to your child's cough. You learn to hear the differences in tone, frequency, and degree of productiveness and understand their meanings. You learn how to contextualize the cough with the other things that are going on--the energy level, the nasal congestion, the puking. You factor all that information in, along with your current degree of hopefulness, and then try to make a decision about whether to start antibiotics. Based on the totality of Lemon's symptoms, I wasn't that hopeful. Plus, it had been 3 months since we'd done any antibiotics, which is about as long as we ever go. I also had a trip coming up for work, and I wanted to be confident that things were under control before I left.











So, we put all that together and decided to start Cayston on Tuesday morning. It was definitely the right call. Lemon responded to it almost immediately and began feeling much better. Cough diminished, puking gone. He does still have a residual wet cough, but I think that's mostly an effect of the Cayston helping him to clear things out. It's that particular "I'm not sick anymore, just getting the junk out of my lungs" kind of cough. Totally different than the "I'm still sick" cough. So, we'll do another week of Cayston and then hopefully call it a wrap for this round.

In tremendously exciting news, Lime managed to pee on the potty for the first time ever this evening. We've been talking about the potty a lot lately, as he will need to be potty trained if he is to go to the summer camp that I have in mind for him and Lemon. He knows what needs to happen, but never managed to quite connect the whole operation until this evening. After he did it, he was very proud of himself, leaped off the potty, and declared, "I go to summer camp! Undies!" We tried to convince him not to get ahead of himself, but I am cautiously optimistic that a half-decade of continuous diaper changing may soon draw to a close. I will not miss it. At all.

Tomorrow morning, I leave for I think my longest trip away from the family since both kids were born--I will miss 4 consecutive bed-times. I'm sort of looking forward to the trip, although I do feel guilty about leaving Papa Bear alone for that long with the maniacs, one of whom needs inhaled antibiotics delivered 3 times a day, in addition to everything else. I know he'll manage just fine, but it's a demanding routine to do solo. The fridge is full of chili, macaroni and cheese, and his favorite coconut blondies, so at least he won't starve. I have to imagine that he won't succumb to scurvy if it's only a few days without consuming any identifiable plant matter?