Sunday, November 30, 2025 – Day 474
Sunday, November 30, 2025
Good morning, everyone.
Last day of November and we’re finally sneaking Thanksgiving in today. We skipped the actual day and had planned to celebrate yesterday, but Mother Nature decided to drop nearly a foot of snow. Rather than risking anyone’s safety, we postponed the gathering to today and everyone can still make it.
The turkey is done, which is one less thing for Cindy to juggle. She opted for the oven this year instead of smoking it. I couldn’t talk her through the grill setup because the risk of getting the beast wheelchair stuck in the snow was just too high. And now that I’m thinking about bringing the beast into the house soon, that would’ve been a very bad situation.
At my last ALS clinic, the neurologist suggested something I didn’t even know was an option: doing my formula feedings overnight. I was very interested in that idea because, truthfully, I don’t enjoy the three daily feedings.
To do nighttime feedings, I’d need a pump and some additional supplies—which means Medicare approval. That was a long shot since I can technically still eat by mouth (although not well) and I’m able to do the gravity feedings during the day.
And yes, you guessed it: Medicare rejected the pump as “not medically necessary.” I looked into buying one myself—about $800, which was reasonable. But… plot twist: if I go that route, Medicare would no longer cover the formula. What? Wait! How does changing the method of delivery suddenly make the formula ineligible? My monthly cost would jump from $0 to $1,000 for something I might not even find worthwhile. So I passed. Although…I’m still scratching my head on the Medicare rules.
Then last week I started having trouble catching my breath. I went upstairs to connect to the NIV (Non-Invasive Ventilator), which helps make up for what my diaphragm can’t do anymore. Let me just say… not being able to catch your breath is terrifying. It becomes your entire world in an instant. I was grateful to have the NIV ready and waiting.
But the breathing issues didn’t stay a one-off. It started happening every day, and it seemed tied to my formula feedings. I’d do a feeding, then spend an hour or two on the NIV afterward. That’s not sustainable.
So I wrote Peggy—my angel caregiver—and told her what was happening. She had a few ideas, with malnourishment being the most likely culprit. My body was struggling with the load of three feedings a day.
Peggy reached out to the care team, and within 24 hours they had an answer: overnight feedings, delivered very slowly so my body wouldn’t be overwhelmed. And this time… Medicare approved it. Best of all, I could do the whole thing while I slept.
Then came the catch: the feedings take 13 hours. What? Wait! How do I stay in one spot for 13 hours? Good question. I don’t have an answer yet. That’s not sustainable either.
The supplies arrived on Friday. Now we need to set up a home health nurse visit to train us. We’ll tackle that tomorrow. In the meantime, I’ll keep doing the daytime feedings…but I’m definitely going to try to eat some of the Thanksgiving meal today. At the very least, the dressing with gravy…I’ve been craving that all weekend.
Have a great Sunday, and stay safe out there. Love you guys! ❤️
Photos… I don’t have new ones, but the kids are keeping me supplied with island pics.😎
- Coco…
- Zack, Nikki, Wyatt, and Coco
- Zack, Nikki, and Coco.
Looks like Coco and my high school buddy Bill, both enjoy being in the photos. Good thing they are both photogenic!
