Tuesday, December 23, 2025 – Day 497

Tuesday, December 23, 2025

Good morning, everyone.
2 days until Christmas. 🎄

No major changes in the feeding tube saga. Outside of Peggy, our care coordinator, I’ve had little sense that anyone truly cares about our situation. I wrote my G.I. doctor, in the morning, expressing my frustration and disappointment with the new feeding tube and received the following response late yesterday afternoon…from one of his registered nurses:

_Hi Mr. Snarski,

I apologize that this happened.
When we placed the order for IR, we did include information about the tube you previously had. I’m not sure where the disconnect was.
I do see that the ALS clinic ordered supplies for you today. Is there anything additional that we can order for you or that you need?_

I was not exactly enthralled by this inadequate and trite response, so I’ll continue impressing upon them, that I’m not satisfied and there is more they can do. With the holidays upon us, I’d be satisfied with an appointment in January to swap this tube out. I think that’s a reasonable request. I think they’d prefer I go away quietly.

Nikki flew in on Sunday with the kids and is staying in Libertyville with her mom. They came over yesterday to make cookies for Santa and build gingerbread houses. Cindy’s sister Barb came over to help—she has a special talent for working with kids and distracting them from hurting each other.

I’m happy to report that everything went very well. Coco is warming up to us; maybe I’ll score a hug from her before the week is over. Wyatt, on the other hand, is always generous with hugs—and he gave me two yesterday, more than making up for his sister.

It was a full day. Nikki even helped out by ordering my Jevity and pump supplies for overnight feedings. That phone call is always a pain, so when Nikki offered, Cindy gladly accepted. Nikki jumped right in—transfer, hold music, the whole excruciating process. Not long after she reached a representative, Wyatt yelled from the bathroom,

“MOM, I POOPED!”

Nikki didn’t miss a beat. She handled Wyatt’s situation and finished ordering my supplies at the same time. From the bathroom I heard her say, “That was easy.” I wasn’t sure if she meant Wyatt…or the supply order. Either way, it made me laugh.

By 3:00 p.m., the kids had reached their saturation point of indoor fun. With the hour drive back to Libertyville, they were guaranteed a solid recharge nap. Once they left, I took advantage of the quiet and grabbed a nap of my own. I was wiped out and didn’t do much of anything else. So goes my ALS experience.

I’ve got today to recharge before Christmas Eve.

If you’re traveling, I wish for you, safe and timely arrivals. Have a wonderful Tuesday. Love you guys! ❤️