Tuesday, December 16, 2025 – Day 490

Tuesday, December 16, 2025

Good morning, everyone.
11 days until Christmas. 🎄

Surgery is scheduled for this Friday to replace my feeding tube. It turns out these tubes have a useful life of about six months. I’m right at the edge of that window, which explains why it keeps failing. I just wish the GI specialists had given us a heads-up—we could have replaced it sooner and avoided doing this right before the holidays.

There is one possible hiccup. I’ve got a pill stuck in my throat…this has been happening more and more over the last month. I’m pretty sure it needs to be cleared before surgery. A few days ago Cindy talked to pharmacist to see which pill could be crushed. Most of them can, except for two, which I’m still trying to choke down. One got stuck last night. This has to stop. We’re trying to get my neurologist to prescribe a substitute —fingers crossed—and get Medicare approval.

Because having ALS apparently isn’t complicated enough, we’re also dealing with a formula approval issue. When I switched to pump feeding on November 28, we were given a four-day supply of formula (one case). At the time, we already had five cases on hand—about twenty days’ worth—so we were covered or so we thought. Cindy called yesterday to restock ahead of Christmas. Smart planning…just not according to Medicare. That one-case delivery on November 28 reset the reorder date, which means we’re now stuck waiting until December 28 for the next shipment. Cindy is still working with the distributor to get an exception to tide me over until then. Suffice it to say, she is not impressed with the supply-ordering process.

We have a couple of appointments today, and one of them requires me to get in the car. I haven’t left the house since mid-November, back when the weather was still cooperating. I’m not exactly excited about facing the elements again.

My sister Maria and her husband Pete will be here this afternoon, driving from Florida back to Minocqua. I’m really looking forward to seeing them—assuming I’m not completely wiped out by then. They’re bringing Jordanian food, which I’ve never had, but something tells me I’ll love it. I’m picturing flavors similar to Indian food. And if I can eat it, that’s one less formula feeding to worry about.

Have a great Tuesday. Love you guys! ❤️

Photo of Wyatt and Coco at the holiday market. They stopped by their Aunt Ty’s booth to catch some fish. They look so realistic…I’m referring to the fish.