I'm pretty much in denial that there's only one full week of summer left. Yes, we have a mere one full week plus a couple days bookending it on either side. Labor Day is as early as it gets this year, September 1, the day after my birthday, and Carter goes back two days later. Jacob is a day after that. It feels SO early this year. This would have been my literal nightmare as a kid. My birthday timing is rough enough--you wake up the next morning and not only is August over, but it's also the unofficial end of summer, and in a year where Labor Day is early and school starts a mere few days later, that was THE WORST. But here we are, starting down locker/schedule pickup day in less than a week and wishing we could cram a little more into our summer.
I really wanted to whisk Carter off to an amusement park this week, but alas, his ulcerative colitis has reared its ugly head again, despite two medications, and he's been pretty miserable. I mean, all things considered he's still in decent spirits, but I can tell the frequent bathroom trips are getting him down. And then Wednesday morning (after waking up multiple times overnight), he ended up throwing up out of the blue. It seemed to be an isolated incident and he felt better as the day went on. He had a couple other nausea moments over the past couple days, but no fireworks...until this morning, when it happened again. It's super painful and forceful when it happens. He also has a lot of pain before and during his bathroom visits. It's so hard to hear him when the pain and vomiting hits, because he's so easygoing most of the time and this is really affecting him.
I sent a message to his doctor but he didn't seem too concerned yet. He just encouraged us to get his next round of testing done. I had to take Jacob to the lab yesterday morning because he is getting a full workup to address his lingering low energy, and I was able to pick up the stool testing kit. I was hoping to do it yesterday afternoon, but timing never worked out when the lab was open and I was home. I wanted to do it this morning but his first bathroom trip was a bit too urgent, then we had the vomiting, and then when he finally got enough in his system to go to the bathroom again, the output was shocking. It was so bloody that I didn't even know what to do. It was all liquid and while there was a little brown, it was mostly dark red. I freaked out a little and wasn't even sure it was going to be testable. I called the doctor and waited forever for a callback. I was wondering if this was finally the time for an ER visit, but they said if he wasn't lethargic or lightheaded or in severe pain, we were okay. The best thing to do was to get the testing done and see if this is Cdiff again. So, next poop (also quite bloody), we did. He wondered yesterday morning if the Cdiff came back, and honestly, he may be on to something. It does seem very similar to what he had prior to the antibiotics. Even though the test for the toxins (indicating an active infection) was negative, he did seem to get better after the antibiotics and particularly once he started the steroid. He had a couple good weeks before Saturday when everything seemed to restart. Maybe it just hung in there and made a comeback. And, of course, Jacob is now super paranoid he's going to get it, so he's constantly demanding we clean everything. I'm just heartbroken for Carter because we were already doing the things that were supposed to help him, and now those aren't working either. I just don't know what to do. This round of testing was originally supposed to see how well the meds were working to decrease inflammation, but sadly I had to assume they'd be as bad as ever given what he's been dealing with. Some came in tonight and it wasn't surprising. Some things were bad but consistent, and others were worse. It all seems to stem from malabsorption, inflammation, or an immune response. It's possible the immune response (high white blood cells, high platelets) could indicate some sort of infection. I guess we'll see where the Cdiff lands. Either way, I'm just heartbroken for him and would give almost anything to make him better.
Obviously frequent bathroom trips make doing much of anything difficult right now, let alone something fun and away from home to close out the summer on a high note. And the thought of school is even more daunting. If we can't get this back under control by then, I'm going to have to see if we can just Imodium him up because he can't miss school for weeks, or risk having an incident. I'm just worried about what his future might look like if these meds don't work, and I'm sad that it's ruining a prime time for the best kind of distraction on top of it all. Summer is so short and I really wanted to do more before it was over. He deserves better than this, for sure.
I'm still holding out a tiny bit of hope to do something over my birthday weekend, though, if we can get an answer quickly. Maybe a baseball game or something like that. I'd feel a little better if we could cram in a little more fun, but obviously there's a lot that has to go right. If we do stay home, it will be the first birthday since 2020 where we weren't doing something exciting. We were in Ocean City in 2021, Disney in 2022 and 2023, and Cedar Point last year. That could be quite the letdown after all that, but clearly I was super lucky to have all those special days.
Most of Jacob's bloodwork came back uneventful. There were a couple things that might indicate low folate, which could be contributing to the fatigue. There was one other oddball thing I'm waiting to hear back on that ran the gamut of easy to concerning answers. Hoping for the easy one, of course. I really do hope supplementing the folate (and maybe boosting the vitamin D a bit more) will get him back where he needs to be.
Oh, and in case we didn't have enough going on, today Craig ended up at a last-minute eye exam because a broken blood vessel from the other day was spreading even worse, and there were a couple concerning symptoms (he said his eye felt "heavier" and he'd had a couple flashes). Thankfully it was just a blown blood vessel and not anything worse, so at least that was one piece of good news. And I got myself a cervical pillow this week, so I'm hoping some of the neck discomfort and my hands falling asleep multiple times overnight will clear up soon. Getting old is fun.
And speaking of getting old, it's been a weird week watching a lot of my friends move their kids to college. These kids are a year older than Jacob, and while he now has two more years because he reclassified, it's hitting a bit close to home knowing that would have been us in a year in another timeline. All of the kids his age have been doing college visits, and I feel like I dodged a bullet getting an extra year. I'm grateful for it, though, because with all that we've had going on (see above), the reprieve is rather needed at the moment. But watching my college friends have college kids of their own is a bit surreal. One moved a kid into Geneseo this week, and another is going to U of R, which are both sort of weird in their own ways. I remarked on one parent's post that it was comforting to see dorm rooms that look pretty much like the ones we had, especially in this era of college campuses needing to have all the amenities to attract students. But these over-decorated dorm rooms I see all over the internet...puh-leese. It's great to be comfortable, but roughing it is gratifying in the long run. I liked living pretty minimally because it made my first apartment or two feel downright luxurious!
I saw a couple videos from Geneseo this week that indicated that my first two dorms are both single room dorms now. I feel oddly betrayed by that. For one, I don't believe any freshman should live alone unless they are a documented "difficult roommate". I think freshmen need a buddy to force them to socialize, especially in this era of the COVID kids who missed a heck of a lot of socializing at a key time in life. I see freshmen moving into single rooms and panic a little because I remember how it felt when my orientation roommate never showed up. I was lonely and ended up feeling like a fifth wheel, and it soured me on the whole experience. That was literally what made me not want to go to school and led me to be a grumpy mess for most of my first move-in day...until I met Mary, anyway. Had I lived alone I probably would have cocooned up in my room. But with a roommate you have an automatic first buddy, and it was easier to get pulled into the giant mob of kids that went through most of our building room by room to meet people. It was exactly what I needed. Second, those rooms were giant. They were less desirable corridor style rooms (so the entire floor shared a few bathrooms), but again, that style is great for meeting people because you can prop your door open and be directly connected to people in the hallway. Suite rooms have a living room and extra doorway separating you. They also have really tiny bedrooms (like, you literally can't fit all of the provided furniture unless you put your bed up high (easier with new beds than in the cinder block era) or stick something in the closet. I can't imagine making those massive rooms into singles when the suite rooms are cramming people in. I think a four person suite (rather than eight) would be an amazing selling point. But it made me a little sad to know lifelong friendships aren't being made in those rooms anymore...though maybe not as sad as the reality that I moved into my freshman year 29 years ago tomorrow. Ooof.
The weather this week was also messing up whatever mojo I had left. It was cool and misty and dreary. I'm not prepared for fall at ALL. This summer has sped by way too fast, and I feel betrayed that not only is it coming to an end soon, but that the weather is making it feel like it's ending even sooner. We rebounded a little today and coming up tomorrow, but then we're back to barely 70 for most of the week. So much for enjoying the fun pool lights I got on clearance last week--that water is cold now! Not that the cooler weather isn't more comfortable than 90s, but cool and crisp has its place, and that is late September into October.
Another interesting part of the last couple weeks has been watching my parents travel through Europe. They're coming to the end of an 18-day trip, first in Prague for a few days and then on a river cruise for two weeks. They're going through tons of towns that I've watched via webcam for years. Beautiful architecture, Christmas markets...yeah, I spent years being obsessed with these spots. This trip is totally up my alley and I'm just a teeny bit jealous of all they're seeing...but thrilled they're getting this once-in-a-lifetime experience, for sure. I just wish it wasn't quite so expensive as I'm not sure that will ever be in the cards for me!
We have another quiet weekend planned, and I'm hoping I can finally get my executive dysfunction in order. I've been struggling with it for weeks, probably because of a combination of worrying about the kids' health, my health, all my unknowns at work, and the constantly messy state of our house that I just don't have the energy to address all by myself. I did manage to finally do a solid cleaning of my kitchen floor tonight, which was a couple weeks in the making thanks to a sugar ant infestation that took forever to clear out. That felt good to get accomplished after putting it off for a variety of reasons--some valid, some not. But there are piles everywhere and I need to address them. You know how I often do all the little things to offset all the big things I can't control? Well, hopefully I can get in that mode for a bit this weekend. Might as well make some good out of this mess!
Finally, my birthday is coming up next weekend. And yes, while I would like to do something fun for it, truly all I want is for a healthy, happy household. That it, that's the gift I want. Let's hope we can make some progress toward that soon and squeeze just a little more fun into what little summer we have left.
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