Week 292: You're so classic

A momentous week: Lemon finally lost his first tooth! Well, second if you count the one he knocked out of his head when he was two. He is thrilled, and will now stick anything of the right shape into the gap in his teeth, including his enzyme pills, straws, pens, etc.

Speaking of sticking, it is spring break this week so of course I am hoping to get Lemon over to the hospital sometime this week to finally get those liver labs drawn. Not the most fun vacation activity, but I'm hoping it will be counterbalanced by all the fun stuff we are doing, including some sessions at art camp, a visit from Grandma and Grandpa, and dancing over and over again to his new favorite song, "Classic," by MKTO.









Lemon hasn't had any more episodes of anxiety about his growth in the past week, which is great. Seeing his growth chart really seems to have helped. We also got two comic books from the clinic about how enzymes work and why people with CF have to eat so much in order to gain weight. He is really interested in them and has asked us to read them to him over and over, so I hope he is learning something. They are kind of awful, honestly, but the information in them is accurate and if it's written in a way that resonates with him, it is worth suffering through them.

With spring in the air, a few things are getting going in the CF community. Coming up once again in May is the Great Strides fundraising walk. Our team is registered but I still need to update our website and whatnot, so watch this space for that. I also just found out that the Wisconsin CF advocacy day at the state capitol is coming up in a couple of weeks, so I just put my name in for that as well. And then it will be a mad rush to summer!

Week 291: Mud

The spring thaw has finally begun, bringing with it the unparalleled thrill of mud. Everywhere. At all times. I feel very fortunate to have my trusty new washing machine by my side during these early spring days.

On Thursday, Lime had his make-up dentist appointment, so I think appointment-wise both kids are now more or less caught up with where they were supposed to be a month ago. Lime handled the dentist pretty well, although there is a pretty clear difference in comfort level between Lemon who has basically had some medical something or another once every month or two versus Lime who has been to the pediatrician once a year and the dentist twice in his life. Lime is deeply suspicious and a bit nervous, but amenable to bribes. Lemon is suspicious but not fearful, has a pretty good sense of what is about to happen, and demanding of payment for his cooperation.

Speaking of teeth, Lemon's loose tooth continues to cling by a thread. I think he is actually a bit nervous about it falling out. I'm leaving for a quick work trip tomorrow morning so I'm kind of hoping it hangs on for another 48 hours, I'd be sad to miss the big moment after all of this.

This weekend, we had an all too brief visit from Uncle Jared--so brief in fact that it appears that no one managed to capture a decent photograph of him, but I'm pretty sure he was here, just in a constant state of motion as his nephews put him through his paces.






Lemon had another episode of anxiety about his weight this week, so I tried a new strategy: I showed him his own growth chart. I explained to him about the concept of "staying on your curve," and showed him where his curve was. We looked at all the height measurements he's had since he was 2, and how they all fall on his curve. That really seemed to reassure him that he was on track, after all. Even at an early age, it seems like the best way to comfort a scientist is with more data.

Week 290: Palm tree in the wind

Greetings from somewhere in the turbulent air over the state of Georgia. I am en route back to Wisconsin after a quick 36 hour vacation in Florida with an old friend of mine who lives in Germany. I’m tremendously grateful to Papa Bear for facilitating this much needed break for me. Although I haven’t spoken to any of the crew yet, it sounds like everyone survived my absence in more or less fine form. 

From up here it feels like thinking back to another world and another life to recall the details about Lemon’s clinic visit on Wednesday morning, but here’s what I can remember. The staff was actually fine with Lemon’s current weight of 45lbs, since that is a gain of about 2lbs since our December visit, and places him in the 59th percentile for  BMI, phew. His pulmonary function tests were also good, or at least they were once we managed to convince him to stop goofing around and actually do the test properly. So, we don’t need to come back for 3 months, at which point it will be June, which is hard to believe. 

Some other tidbits we got were feedback from the GI doctor, who is of course still waiting to see his next round of liver test results. We were told that we’re going to do another liver ultrasound in June, and assuming that the ultrasound plus whatever liver function tests we have by that point look good, he will try to taper the ursodiol and see if we can get off of it. I know Lemon would be happy to see his pill burden go down so that is definitely something to hope for. We also learned that a medicine we used once before, ciproheptidine (an antihistamine and appetite stimulant) can help reduce night time vomiting in other CF kids with g-tubes. We are all about reducing night time vomiting at our house, so we now have a prescription for that on hand to try next time Lemon is sick. Hopefully that will help us prevent him from losing so much weight every time he gets sick. 

And, once again, we failed to get liver labs drawn. We got so far as the check in desk for the lab this time, so closer than we’ve been in a long while. However, they told us it would be at least a 30 minute wait so, rather than wait in the germ-filled waiting room, we took off in the hopes that we will be able to get back there at a less busy time of day. Fingers crossed. Otherwise I think we will just wait until we’re back in the clinic for our scheduled mega visit in June, when we’ll be drawing blood for the whole panel of annual labs anyhow. 

Aside from all these medical updates, I have it on good authority that, during my absence, Lemon advanced from blowfish to clownfish at swimming lessons. So, he should be all ready for summer if and when it arrives!

On a final note, our new washing machine arrived. It is so glorious it is hard to put into words. It may be my new favorite thing. I’m not sure what that says about the current state of my life, but hey. It’s the truth. 

Week 289: Heavier

This week, we suffered a major loss in our household: after 5 years of near-constant abuse, our washing machine has bit the dust. I loaded it with a small load of running clothes, started it, and it emitted the unmistakable smell of electronic self-immolation and became completely unresponsive. We've repaired it a few times before but came to the sad conclusion that its life with us had drawn to a natural close at this point. This means that we must survive until Thursday, when the new machine that I bought for Papa Bear as a 40th birthday present arrives. I even got him the matching dryer. Happy birthday! (Don't feel too bad for him, he's in the Bahamas right now while it's -9F in Madison).

Other than the tragic loss of the washing machine and the celebration of Papa Bear's birthday, this has been another fairly quiet week. The one thing that I have been starting to think about more is how to help Lemon navigate the psychological aspects of CF, as he is getting old enough to process more of what is going on. Thus far, it's been pretty easy to act like whatever insane thing is happening is "normal," and for him to buy into it being normal as long as we acted like it was normal. That is now starting to change.

Case in point, his weight. It's really important for me to know his weight so that I can know where things stand, and make decisions about what we're doing with tube feeds. I have tried to never make a big deal about it. He sees me and Papa Bear weigh ourselves all the time. Whenever we do a weigh-in, I try to weigh both kids, and Lime is always happy to hop on the scale and make it a family activity. I also try not to make anything of the number that the scale says. We read the number together, try to figure out what the decimal point is and how to pronounce it, and then I say, "OK that's great, let's go play." Only afterwards, when Lemon is out of earshot, do Papa Bear and I talk about what the number was and what it means.

However, this week, Lemon got on the scale and weighed 44lbs. He got really upset, and said that his number was always the same and never got any bigger, and he wanted it to get bigger. I couldn't lie to him, it has been staying the same and we really do want it to get bigger. So, I tried to reassure him that 44 was a fine number (it's sort of borderline fine, certainly better than some of the lower numbers we've seen this winter), and that getting bigger is a slow process. I did mention that eating food could help the number get bigger faster, and it became clear that he wasn't quite upset enough about the number to resort to something desperate like that.

So, I do think one thing I will talk to the clinic about on Wednesday at our much-delayed visit is some strategies for talking to him about his weight and his pills, which are the two things he seems the most upset about right now. The enzymes don't seem to be a problem, but the pills he has to take after dinner have become a little contentious. Both of these are going to be things he will have to deal with for a lifetime, so I want to make sure we help him form good attitudes and coping mechanisms early so that he's ready for whatever the future holds for him.

Week 288: One hundred

I believe this was our first relatively peaceful week in 2019. Still cold, still snowing, but only one kid threw up, and only once (knock on wood), and our collective cold seems to be waning. What more could one ask for?











At the end of last week, Lemon's school celebrated the 100th day of classes (a few days behind schedule, of course). The kids were asked to decorate a shirt with 100 of something. Always fussy about what he wears, Lemon was not having any of it. I offered stickers, beads, beans, grains of rice, pieces of yarn. Nope. Eventually we compromised on cutting a piece of fabric, decorating it with markers, and attaching it to his shirt. He was very pleased with the result, but of course wouldn't actually wear it to school on the 100th day. Oh well.

 With Papa Bear out of town for a few days, I decided to take the kids out for dinner one night. Now, remember, like any parent, I have struggled mightily to find things that the kids, especially Lemon, will eat. If you are a long-time reader, you will remember that I spent literally a year trying to teach this child to eat solid food. You know what he could not get enough of? Spaghetti with tomato sauce prepared by Denny's. True story. I am trying hard not to be offended.

This quiet week was well-timed, since it gave us a chance to gather ourselves for next week, when Papa Bear will be away for a few days, we have our make-up clinic visit, and then I go away for a couple of days. Once all that's done, we should be really close to spring. Right?

Week 287: And a half

February is a competitive month. January set a high bar, but February is doing its best despite being 3 days shorter. As anticipated, we had yet another snow day on Tuesday. And Sunday would have been a snow day had it been a school day, but luckily, it wasn't. I will refrain from commenting about this coming Wednesday except to say the forecast contains some kind of shape like an asterisk followed by a high two-digit number and a percent sign. At least I have been getting my money's worth out of my 3 different snow shovels and my roof rake.

To continue with last week's parallel themes of planning, weather, and the interaction between the two, here's one I bet you could never have anticipated (I sure didn't). I'm taking a course this semester to try to learn a new skill for my job. Luckily, I live close to a university, and the class I'm taking doesn't start until 4pm. So the whole thing works out perfectly: I go over to Lemon's school, meet him for pick-up at 3:30, get home with him at 3:40, hand him off to the babysitter, hop in the car, and am in my classroom a couple of minutes before 4. So far so good. Except that school has been closed so many days due to weather that if the schools took no actions, we would finish the school year below the minimum number of required instructional hours. What actions are they taking, you might wonder. Well, obviously, they are extending the school day by 11 minutes every day until the end of the school year. Because kids learn A LOT between 3:27 and 3:38pm. I don't usually say that I can't even, but really, I can't even.

Other than that, Lime and I have had a cold all week. Lime almost certainly picked it up at the germ hive (aka preschool), and then I caught it from him since his favorite thing to do when he isn't feeling well at night is to crawl into bed with me and cough directly into my face. Since I've caught this cold from him, every time I cough, he reminds me "Mama, cover your mouth when you cough!" Great tip, kiddo, better file that one away in case it ever becomes relevant to your life. Luckily, Papa Bear has managed to escape thus far. Lemon may have a touch of it, it's hard to tell. He's definitely a tick above baseline in terms of cough at the moment, but not as bad as Lime or I, and I sure hope he escapes it. We could really use 3 more healthy weeks to put on some weight.

Tomorrow is Lemon's half-birthday, which we are celebrating with cupcakes at school.This is the first year where he's expressed any interest in his half-birthday, or in being something and-a-half. He also has his first real loose tooth, which he is very thrilled about. To look at the huge mountains of snow around our neighborhood, you'd be hard pressed to believe that it's ever August here, never mind that such a thing could happen in 6 months time, but here's hoping it's true!

Week 286: Nothing to go on

At least once per month (week/day/hour), I tell myself that I am officially giving up on ever making a plan about anything. But, the planning instinct is strong within me, so moments after resolving to no longer attempt to plan, I start planning again. This is where planning got me over the past 10 days or so:

1. I planned to have Lime's dentist appointment on January 30, but it was cancelled due to the polar vortex.

2. The next available date they had was the morning of February 6. Without looking at the calendar, I accepted.

3. I realized after consulting the calendar that Lemon had clinic on the morning of the 6th.

4. I cancelled the dentist appointment and took their next available, which was in mid-March.

5. On the morning of Wednesday the 6th, the clinic called me saying our nurse practitioner had a family emergency and they had to cancel our appointment. Sigh. Net of zero children receiving scheduled medical care. Now we're going March 6. More time to gain/lose weight I suppose?

6. I had scheduled Lemon to do his multiple breath washout test for his clinical study at 11 a.m. on Friday the 8th, since that was a day on which he was not supposed to have school, and I was not supposed to have any important phone calls for work.

7. The no-school day was replaced with a school day due to so many days off for the polar vortex (see above). And, some changes at work meant that the 11 a.m. phone call went from being optional to mandatory. Perfect. I begged off of the 11 a.m. call, figuring it would be no trouble to make the other mandatory call of the day at 1 p.m. given that the test was supposed to take an hour.

8. Thinking that the test started at 11 a.m. and would only take an hour I planned (you see the problem, right?) to also quickly run Lemon over to the lab afterwards to finally have his blood drawn for his liver tests. I had the lidocaine cream, Saran wrap and tape in my coat pocket to get him ready while the breathing test was going on (more planning, very bad).

9. I also planned (I am incorrigible) to take him to McDonald's when all this was done as a reward.


10. We got to the clinic right on time for the multiple breath
washout test. The test basically involves biting down on a thing that looks like the end of a snorkel and breathing through it. The only trick is to do all the breathing through one's mouth, so that all the breaths go through the apparatus and can be measured by various sensors. The solution: a nose clip, to make sure you don't accidentally breathe in or out
through the nose during the test.

11. Unfortunately, the 3 staff people involved in administering the test were clearly long-term members of Team Zero Planning because, although this is the pulmonary function lab at a children's hospital and the test subject was known to be 5 years old, NONE OF THEM BROUGHT ANY CHILD-SIZED NOSE CLIPS TO THE TEST.

12. We spent a very substantial number of minutes trying to retrofit one of the adult sized ones so it would stay on Lemon's nose. We tried having me hold his nose with my fingers, but then he couldn't see the videos playing on my phone in my other hand (because Team Zero Planning had failed to load the tablet they have FOR THIS EXACT PURPOSE with any videos that might remotely hold the attention of a 5-year-old.).

13. The lead guy who was administering the test then offered that, in a specific drawer of a specific cart located in a specific room in a distant part of the hospital, he had a variety of nose clips, some of which might potentially work.

14. One of the other people was then dispatched to retrieve the above. Much time passed as this other random person attempted to locate the specific room/cart/drawer.

15. The correct nose clips arrived, Lemon did 3 good trials of the test in about 15 minutes, and we were done. It only took 1.5 hours (!?!?).

16. I wasn't about to not take him to McDonald's given that a) he'd been very good, and b) he needed to eat lunch before going back to school. So we scrapped the idea of the lab and went to McDonald's, and I managed to convince him to eat his lunch at an unusual rate of speed (for him) so that I dropped him off at school at 12:59:57 or thereabouts, and then dialed into my work phone call at 1pm. I drove home, but realized that I didn't want to risk going to my downstairs office because my phone almost always drops calls when I walk into my own house (technology, we call this).

17. So, instead of doing my call from my office on the land line, I did it with my cellphone from my car, parked in the garage. Not wanting to asphyxiate myself, I turned off the engine, and the temperature in the car rapidly equilibrated with the outside world at around 8F. Also I didn't have a notepad, so I took notes (wearing gloves) on the back of the envelope containing the $50 we received for Lemon participating in this aspect of the study.

18. We are supposed to get 10 inches of snow overnight.

19. I give up.