Thursday, June 26, 2025 – Day 317

Thursday, June 26, 2025

Good morning, everyone!

Another day of rest and recovery. I can’t say yesterday felt much better than Tuesday, but Cindy told me I looked and acted better. Now I just need to pass that memo along to my body—because it clearly didn’t get the message.

I spent most of the day in bed, trying to get up occasionally to help my body adjust and nudge things back toward normal. Still no success on the toilet front since before surgery on Monday. I know—TMI—but I’m just trying to keep y’all in the loop. Don’t you want to share in the full experience?

We did our first home feeding yesterday. I wasn’t feeling up to it—still bloated and uncomfortable—but I knew we had to start somewhere. I managed two bites of toast for breakfast—that was all I could force down.

So for lunch, we set up the feeding tube. If I’m not eating anything by mouth, I’m supposed to get close to 1,500 ml of formula through the PEG tube each day. We started slow, just 150 ml, to ease my body into this new way of getting nutrition.

The syringe holds 60 ml, so we did a water flush first, then started with the formula. After the first syringe, I didn’t feel right—thought I might lose it all. So we stopped, cleaned the line, and I hobbled back upstairs to bed for what turned into a very long break. I stayed there until dinner.

At 6:00 p.m., I came down for a meal I had no hope of finishing. Donna and Joe dropped off a deep-dish pizza (so kind of them). Cindy cut up my slice, but I only managed half before calling it quits. I lingered, hoping to rally for a second wind, but nope… appetite still MIA. And I had no desire to try more formula either. Not great.

Cindy eventually talked me into a couple of homemade chocolate chip cookies from Mike and Beth. They were probably the most calories I got all day—and yes, they tasted great—but even those were a bit of a struggle to finish. The appetite just isn’t there.

By 7:00 p.m., I was back in bed with Cindy’s help (which I need because of the pain when engaging my abs), and ready to call it a night. I had just a few pages left in Naked Prey, and once I finished, I was officially caught up on all the Prey books delivered so far. Next up is Hidden Prey—and now that I’ve said I’m caught up, I’m fully expecting another book to show up today or tomorrow. Still no clues who’s behind the deliveries. Someday, maybe? Until Hidden Prey arrives, I’ve got a few other books to keep me busy.

So here we are—starting a new day. I’m feeling okay at the moment. We’re expecting a visit from a retired GI nurse today—Kathy (as in Kathy and Jack), one of Cindy’s high school friends. Her help is very much appreciated. The hospital told us a home health nurse should have come by yesterday, but we’ve had no calls, texts, or emails. So until they show up, we’ll gratefully lean on friends who know what they’re doing.

I’m not sure how anybody could do this ALS journey without an army of people behind them. Cindy has taken many phone calls this week from so many of you offering to help. Thank you for all that you do to help us thrive—it really makes a difference in our day-to-day life.

Earlier this morning, I received a photo of Wyatt sitting on his front porch with a dozen donuts he’s giving to the garbage men. Sweet! I should probably do donuts today too… tasty calories.

Have a great Thursday.

Love you guys! ❤️