Week 311: Just fill out this form

Hello August. It is hard to believe that Lemon's 6th trip around the sun is drawing to a close, but here we are. This weekend featured the kids' joint birthday party, which they have been so excited about all week. So, naturally, Lemon came home from camp (aka germ nexus of the universe) complaining of dizziness. At first, we attributed that to the fact that he'd forgotten his water bottle so he was pretty dehydrated. Also he chose not to eat a single molecule of his lunch. So, we figured that if we got some Gatorade and food into him, matters would improve. Hah.



He went to bed Friday night only to wake up weeping with ear pain and a fever. So, we gave him some ibuprofen and hoped against hope that it would pass. And, on Saturday morning, he still had a bit of a fever but seemed overall not in such bad shape. Saturday night wasn't that much better than Friday night, unfortunately, and he was still in a lot of pain and feverish on Sunday morning, with the party just hours away. I whisked him off to urgent care where, after using a giant syringe of water to flush his ear so she could actually see what was going on, the nurse diagnosed him with another ear infection--possibly a recurrence of the one he had when he had strep throat a few weeks ago, or maybe something new, who knows. In any case, we switched from amoxicillin to cefdinir, gave him the first dose as soon as we got home from the pharmacy, and gave him a dose of ibuprofen right before the party.

Thanks to the miracles of modern medicine, the party was a big success. The kids, who generally agree on nothing, were in complete solidarity on their cake choice from Costco: chocolate cake, chocolate filling, unicorn design. Done. Lots of friends showed up, and a splendid time was had by all. No one had the emotional stamina to make it much past 6:30 that night, which is always the sign of a good day.






With the memory of the endless summer camp forms still fresh in my mind, it is now time for school forms, it seems. Lime's school is making vague motions towards joining the rest of the 21st century in that instead of sending a thick envelope with those pre-printed forms that you fill out and then retain the canary copy while returning the white, rose, and periwinkle copies to the school, they now send an email with 71 different attachments. These attachments must then be downloaded, printed, filled out by hand with ink signatures, and then hand delivered to the school office. Progress!





Of particular note is the state immunization form, required by the state of Wisconsin for all children enrolling in preschool. It requires an ink signature from the pediatrician. Fine. I called the pediatrician's office, said that I needed the state form filled out for my kid, and asked when I could pick it up. I was informed that I could print off a copy of this (totally standard, state-issued) form, hand-deliver it to the office, fill out the please-fill-out-my-form form, leave these two documents with the office, and they would call me when I could pick them up. Because in the year of our lord 2019 it is imperative that parents spend an adequate amount of time driving around town delivering pieces of paper that contain only information that is also available through our state's online immunization registry. I mean what else would we do with our time. Maybe look for child care, since camp ends in two weeks? But that is a source of panic for another day.

 

Week 310: VDN

When the kids were young, I had anticipated that school would be a hotbed of contagion. What I had not anticipated was that school has nothing on the true hotbed of contagion, summer camp. Summer is not yet over, and between the kids' two camps we have had confirmed cases of strep throat, pneumonia, head lice, and now impetigo. Luckily, of these, only strep throat has so far made its way into our home. Lemon did have a pretty nasty stomach bug on Friday evening. However, I guess illnesses that merely result in a few loads of really gross laundry do not rise to the level of an official notice from camp. 

Despite this microbial onslaught, Lemon has achieved a new milestone: he is finally through the 50-lb barrier. This means that after 11 hard-fought months, Lemon is finally ever so slightly larger than he was at the end of last summer. Hooray! Now if we can just pack on another pound or two before the start of the school year, I will feel like we're heading into first grade with a leg up on the impending winter.

We have some old friends staying with us this evening. I thought I was excited about seeing them and having them stay with us. But Lemon and Lime were REALLY excited. Especially because our friends have a 7-year-old who is amazing (legitimately, but especially so in the eyes of the 4- and almost-6-year-old). So, this evening was very reminiscent of our weekly dinners during graduate school, but with a much higher level of background chaos than we had in those days. I am pleased to report that the level of nerd humor is undiminished, however.

I am not at all prepared for the fact that August begins this week, and with it come a slew of fun events and also a lot of planning that has to happen. We have the kids' joint birthday party this weekend, followed by a visit from Uncle Jared and Auntie Lauren, followed by a visit from Grandma and Grandpa from New York (and our annual trip to Lake Geneva, which will include Lemon's 6th birthday--what???). Sometime in there I also have to find a new afternoon nanny to cover the afternoons for the last year that we will have a kid at home all afternoon. Oh and Lemon's quarterly clinic visit at the end of the month. And then before you know it, fall will be upon us, Lime will be in 4k, and Lemon will be in first grade!  

Week 309: Personal growth

After a quick trip to Minneapolis last week, I got right back into the swing of things on Wednesday morning with Lime's 4-year-old check-up. Quite amazingly, this is his first contact with the medical establishment since his 3-year-old check-up. I am pleased to report that Lime's growth has picked up tremendously, insofar as he is now 11th percentile for height instead of 6th. His pediatrician was particularly pleased to note that he is now in the 28th percentile for weight, so a true giant among the smaller-than-average. Other than that, there were no remarkable findings. He received two shots, the administration of which required all four of my limbs as well as all four of those belonging to the medical assistant. The sound track went something like this: "No no no no OWW OWW THAT HURTS <pause> can I have a sticker now?" And that was it.

Lemon has been doing really well at his new summer camp. I assume he's getting his enzymes with meals and snacks, although it is hard to tell since he is reluctant to talk about anything that happened during the day, much less details about his care. So, I am forced to go by the metrics I can evaluate, which are poop and weight gain. Both appear OK at the moment so I am taking that as evidence enough. I actually haven't weighed him since we came back from our vacation so I should have him hop on the scales at some point. But, I can tell just by looking at him that he has that wonderful summer fleshiness about him that will be our saving grace come fall.

We had a fun family weekend doing the usual things around Madison, a fireman's block party including a ride up in the ladder of a ladder truck, and a trip to the zoo. Both kids apparently had so much fun over the weekend that they were reluctant for the week to get going again, and did not want to be left at their respective camps this morning. Meanwhile, I think Papa Bear and I might have been secretly relieved to retreat to the relative peace and solitude of our respective offices. Not that we didn't have fun over the weekend, mind you, but man those kids have a lot of energy. I wonder where they got that from (in other news, my father is on a multi-week hiking trip in the Alps and I ran 18 miles on Sunday...).








It definitely feels nice to settle into some kind of routine after all this traveling around. None of us are going anywhere until mid August, so it will be nice to have a few weeks of just going to camp and work and doing things around town. Lest things should get too dull, a couple of kids from Lemon's camp were sent home with head lice today. Not from Lemon's group, and he was checked and doesn't have them, but it's still enough to cause raging paranoia and itching!

Week 308: Return to reality

Our trip to Cape Cod was splendid. We saw so many wonderful friends, celebrated Lime's 4th birthday, and generally had a blast. This trip did make me appreciate how much easier travel with the kids has become in the last year. Admittedly, it is still far from easy. But it is far less impossible than it once was, and I am very grateful for that. We flew with the vest without incident, although Lemon did not exactly live up to his end of the bargain of pulling it through the airports. In the Boston airport, they wanted to examine the contents of the g-tube replacement pack that I was carrying as well as the formula pump, but after consultation with the security supervisor, both of them were allowed through without incident. Now that we are all back in Wisconsin safe and sound, I think I can breathe a sigh of relief that no one got sick on the trip.

Lemon started at a new camp today, which he is very excited about. I didn't have more than 5 minutes to train his counselor on the use of enzymes, but Lemon reported that it all went fine and that he got them at lunch and both snacks. So, hopefully that's true. He had a great time so I'm happy about that at any rate.

I'm actually writing this tonight in Minnesota, thanks to an inconveniently-timed work trip, so I will leave you with a bunch of photos courtesy of Papa Bear, and pick up the written narrative in more detail next week, when we begin a series of four (yes, four!) consecutive weeks with a fairly consistent schedule. What a luxury that will be!

Week 307: EsCape

We made it to the east coast for our vacation! Travel was exciting as always, so many moving parts. But, we pulled it off and I think this far into the trip it is safe to say that we didn't forget anything important. We finished Lemon's course of amoxicillin today and it seems like he is in fine fettle so hopefully the whole strep episode is behind us. We have been having an absolute blast reconnecting with old friends and enjoying the coast. Since we are on vacation, the written part of the blog is also on semi-vacation, so here are some photos and back at you next week!

Week 306; Strepping up

Despite it being summer, in the early days of this week Lemon developed a cough. My first thought was more allergies, perhaps a fresh bloom of some pollen-rich plant. But, the cough didn't sound like allergies to me, it was wetter and louder than the normal allergy cough. And, he threw up on Wednesday night, while allergies basically never make him throw up. So, I was puzzled. But, he seemed sort of OK on Thursday, although the cough was sounding bad enough that I was beginning to think about starting Cayston (ugh, bad timing with a vacation coming up). I decided to wait until Friday to see what was happening. 

On Friday morning, Lemon still seemed pretty OK although he said that his stomach hurt in the morning. But, that happens every now and again, to be expected with overnight tube feeds. So, we got in the car to go to camp. On our way to camp, I got an email from the camp saying that they had confirmed cases of both strep throat and pneumonia among the campers. FABULOUS. I dropped Lime off at camp but took Lemon home. And good thing since he continued to not feel well on the way home and then of course threw up in the car WITHIN SIGHT OF OUR HOUSE. I mean I can't blame him, when it happens it happens. But really? Not 90 more seconds?

He spent the rest of the day loafing around the house. I gave him some ibuprofen and fluids and he seemed to perk up, he had a slight fever but no other symptoms besides the cough and the puke. I decided not to start Cayston since I figured this might be a camp virus thing, not a CF lung thing after all. Finally, on Saturday morning, he came into our bedroom at a little before 6 crying because his throat hurt so much. Aha. Strep. You know it's serious when your CFer is begging you to take him to the doctor ASAP. So, we went to urgent care (8 a.m. Saturday is an awesome time to go, btw), and the pediatrician took one look at his throat and said, yep, it's strep. As an added bonus Lemon also had a slight ear infection. So, within 15 minutes of arrival, we left with a prescription for amoxicillin. Luckily, after 24 hours of amoxicillin, Lemon was pretty much back to himself. Of course he lost a pound and a half because of all this but what else is new.

In any event, I am just infinitely grateful that it was a random, totally typical childhood illness and not some horribly timed CF exacerbation. We still will have to do amoxicillin for pretty much our entire trip but that is soooo much easier than Cayston, we hardly notice, except for the slight nostalgia of doing a liquid medicine through the G-tube again, as we did every day in times of yore.

So, Bostonians, we will be with you soon! If we don't have plans to see you yet, ping me, let's make some. I have it on good authority that Lemon is no longer contagious...

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?