Week 305: Camptastic

Camp has begun! Here is an amazing thing that happens now that the kids are in camp: we drop them off at camp at 8am, and they stay there until we pick them up around 4:30. No mid-day pickups. No people roaming around the house while I'm trying to work. It is astonishing. I think after almost 6 years of dealing with child care throughout the day, I had stopped noticing how disruptive it was. Holy cow.  We still have one more year ahead of us with a kid at home during the afternoons, but after that, we get this all the time? Sign. Me. Up.










Things seem to be going well at camp so far. I went a day early for orientation, to drop off Lemon's enzymes. The teacher I handed them to looked at the size of the pills in the bottle in shock, and asked "So, he really just swallows these?" Um, yup. she said her son has to take medication right now that she has to crush into yogurt. Ah yes, we have been there. And are there no more. It does feel good to have made progress, and to have things be easier for Lemon wherever he goes. They are keeping the enzymes in the school office, so he goes there before snacks and lunch to take them. But, thanks to the fact that they are pills it is very quick and not disruptive. He's also learning to advocate for himself and remind his teachers when they seem to forget. He had one episode towards the end of the school year where he didn't get enzymes, and as he put it, his poop was all weird. Once I told him about the connection between missing enzymes and weird poop, he seemed very motivated to remember.


Lemon has had another little series of episodes of being discontent with doing the pump and formula recently. Papa Bear and I have both talked to him about it, and about how much it helps his health. We have both told him about how if he wants to do less formula, he would have to eat more. His current line is that maybe when he is in high school or college he will be ready to try that approach.







In other good news, we got the results of the liver ultrasound and elastography back, both normal! I think that's it for medical events for us (fingers crossed!!!) until the onslaught of pediatrician visits and whatnot that precede the start of the school year. In the mean time, we are gearing up for our summer vacation, which of course means me mentally making lists of all the equipment that we need to bring with us. We will be bringing the vest this time, per Lemon's request, so that is yet one more big piece of equipment that we will need to haul. He keeps claiming he wants his own wheelie bag, so having him haul a $10,000 medical device through a couple of major airports should be a good test to see whether he's ready to handle that responsibility, right?

Week 304: Get it done

This week, we knocked out the last few medical bits and pieces that needed to be taken care of before summer started in earnest, namely a quick visit to the dentist and a liver ultrasound for Lemon. I had carefully scheduled the dentist appointment to be on the day after the last day of school, and then of course the school year got extended by a day thanks to all the days we missed because of the polar vortex. Luckily the appointment was at 7:30 a.m. so Papa Bear was able to get Lemon to and from the dentist in time for the new last day of school. Good thing, since those key instructional hours without which our school would have lost accreditation or whatever were spent at an indoor playground/arcade, and we would not have wanted Lemon to miss such an important educational experience.

On Friday morning we had the liver ultrasound. Lemon was not keen on going (although these days he is also not keen on leaving the house for bike rides, swimming lessons, or the library, so I try not to over-interpret). The technician that did the ultrasound was really amazing. She quickly put Lemon at ease, let him touch everything with his fingers first, and held the probe up to his arm so he could see inside his arm before she did his belly. That totally calmed him down, and then he just looked transfixed at the screen as images of his liver and pancreas whizzed by. He was so still and cooperative that both the technician and I were kind of shocked, and he was rewarded with a selection of 8 stickers from the prize area. We don't know the official results yet, because of course the images have to be read by a doctor, so stay tuned on that. We are following up with the GI doctor in November (gee, I guess I should schedule that appointment), so at that time we can evaluate our strategy going forward and decide if we want to try tapering ursodiol in light of the combination of the blood tests and ultrasound results.
















In the meantime, I've been trying to get everything organized for the start of camp, which is Wednesday. I ordered the 10,000 things the kids apparently need for this experience (ie spending the day playing at a Montessori school), and tomorrow I'm driving out to the camp to drop off some of the gear and meet with the camp instructor to hand off enzymes and instructions in that regard. At least I finished filling out the myriad different online forms that are required!

Last but not least, happy belated Father's Day to all of you meeting that description. I am beyond lucky to have two great dads in my life. Papa Bear, who fills our kids days with love, fantastical stories, bad puns, and handles all the behind-the-scenes paperwork that a household like ours requires to keep running. And my own dad, also known as Opa, who raised a girl who is unafraid to wield a pickax when the situation calls for it, and is an amazing grandfather and role model to Lemon and Lime. Where would we be without these guys? Nowhere.

Week 303: All good

I don't say this often, but this week was excellent. Lemon and I went to our big clinic visit on Wednesday morning, and it went remarkably smoothly. For once, Lemon was in a cooperative mood, and went along with everything he was asked to do. He was totally fearless about the PFT, the throat culture, and even the blood draw. With only minimal prompting from me, the clinic managed to have things run on a more or less tight schedule, including checking us in for our x-ray and blood draw while we were busy with other parts of the appointment so that we could get our tests done and get out of there in a timely fashion. Everyone was very pleased with Lemon's weight gain and totally on board with the plan of going up to 4 cartons of formula a night during the summer to fatten him up before first grade and whatever new round of big-kid viruses that entails.




Even better than the clinic visit itself were the lab results that we got afterwards. Liver function? Normal. Glucose? Normal. Iron levels? Normal. Counts of various blood cells? Normal. X-ray? No major changes from last time, which is about as normal as one can hope for in CF. We are still waiting on the results of the throat culture and a couple of other things but so far I couldn't be happier. We put in a lot of hard work this year and it's nice to see that it has paid off.

On Friday, Lemon graduated from kindergarten. The graduation ceremony was really well done. How the teachers managed to get 80 kindergarteners to behave in a more or less coordinated and orderly way for an entire hour is an absolute mystery to me, but they did it. The kids sang and danced, received little diplomas, and had a big picnic lunch outside afterwards. Friday was also Lime's last day of 3-year-old preschool, although that even was marked by considerably less fanfare. Still, a major accomplishment for him, and he has grown tremendously (in intellect and ability, if not physical size) since the fall.

 It is hard to believe that this school year is now behind us. It seemed so daunting when it started, with all the challenges of the new schedule, new places, new childcare arrangements, new germs. And yet, here we are, on the cusp of summer, with all of its attendant challenges to think about. Not the least of which is the apparently infinite list of things that the kids need for summer camp starting next week. Ah well. Monday night is for blogging, and it's looking like Tuesday night this week may be for summer gear acquisition. Whatever it takes.

Week 302: Seeing the light

This week, Papa Bear went on a long trip to California, leaving me alone with Lemon and Lime for I think the longest time since they were born, a total of 6 nights. And you know what? It has gotten tremendously easier to take care of them solo. It's still a busy time, and the challenges are different than they used to be, but we made it through just fine. We have finally reached a stage that I have been dreaming of since Lime was born, where they can be playing outside, and I can also be outside but doing yard work, and that can be stable for stretches of up to several minutes at a time. Likewise indoors--I can do things like prepare food or, heaven forfend, take a shower, without too high a risk of calamity. The fact that they both use the toilet and more or less sleep through the night (as long as you define night as ending somewhere between 4:30-5am) are added bonuses.

After writing the post last week, I saw no reason not to just take Lemon up to 4 cartons of formula a night, to see how he would tolerate it. Guess what? After a week of that he gained a pound. It's almost like putting in more calories causes weight gain or something. I will of course talk to the dietitian about it on Wednesday but I think this is a good plan for us for the summer. I definitely want to see him above 50 lb before school starts up again. Speaking of which, his kindergarten graduation is on Friday, how is this possible???

Other than keeping up with the kids and working, I spent a good amount of time this week getting all the paperwork in place for the various summer things. Emergency contact forms, immunization forms, authorization to give medication forms, and on and on. Two kids, two summer programs, and it was several hours to get all that done, but I think it is, except for the actual hard part of meeting with the different people at the camps to give them instructions about how to give enzymes and when. At least our plan this summer is much simpler than last summer, when we were still doing the whole "beads in applesauce" business. Good riddance to that.

I have to say I am not looking forward to our epic clinic visit on Wednesday. We are doing EVERYTHING at this visit, X-rays, labs, PFTs, meeting all the various providers, etc. I know it will be long and draining, but I am glad that right now Lemon is at his baseline (no cough!) and his weight is good, so we should be in good shape. I just hope the rest of the tests are in line with my overall impression that we are in a good position going into the summer. Just to make sure we cram in absolutely everything before the summer gets going, we are also going to the dentist and having a liver ultrasound in the next 10 days.

And then it is a headlong rush to camp, vacation, more camp, birthdays (these boys are turning 4 and 6 this summer, people!), and then 4k and 1st grade. It does feel like everything is happening rather quickly. But, since the overall trend does seem to be that things are getting easier, I will take it.