Tuesday, December 9, 2025 – Day 483

Tuesday, December 9, 2025

Good morning, everyone. 16 days until Christmas. 🎄

It’s been a week since I started the overnight pump feedings, and so far my body is tolerating it surprisingly well. I’m essentially doing the equivalent of two feedings while I sleep, with a third one midday. It’s much easier to stay compliant with my required nutrition this way instead of trying to carve out three separate times every day. Heck…I never ate three times a day even before ALS…I was a lifelong lunch-skipper. And I’m still getting a few bonus calories by mouth during the day. If this routine doesn’t fatten me up, then I may be a lost cause.

There is one hiccup, though, and I’m still troubleshooting it. I use four cartons of formula, each 237 mL. I get to set the hourly rate based on how long I want the feeding to last overnight and what my stomach will tolerate. I’ve been aiming for an eight-hour window—seems like a reasonable amount of time to be in bed. Four cartons of formula (Jevity 1.5) totaling 948 mL go into a bag one liter feeding bag and then runs through the pump. So over eight hours I should be running at about 118 mL per hour (948 ➗ 8) to empty the feeding bag.

Simple math, right?

Well…not so much.

Out of seven nights, only two feedings have lasted the full eight hours. The other five have wrapped up in about seven hours, which means the pump runs dry and screams at me at 3:00 a.m. And even I don’t want to be awake at that ungodly hour. So either the pump isn’t calibrated correctly or I’m not actually starting with a full 948 mL of formula.

The pump is made by Cardinal Health and the formula is by Abbott, so someone’s the culprit—I don’t think the error is in the process. Since I want these overnight feedings to be predictable, I’m going to start keeping notes to figure out where the discrepancy lies. I don’t want these surprise 3:00 a.m. wake-up beeps. And I’m not sure If I want to point the finger at Cardinal Health or Abbott.

Today, I have PT coming to the house. I’ve been good about doing my neck exercises since last week and while my neck is still sore during the day…it’s much better than it has been. Maybe today we can solve my transfer failure…I need to stay off the floor.

On a lighter note, here’s the text I got from Alex yesterday:

“I was reading about the history of the Finnish navy and saw something interesting. Apparently they put barcodes on the side of all their warships… so that when they come into port they can Scandinavian.”

It has me laughing.😂😂

Have a great Tuesday, everyone. Love you guys! ❤️

Photos today are from the Walker farm in Caledonia, IL. Courtesy of Dave Walker. This is farm where I got to fulfill my childhood dream of being a farmer. I loved every minute of the experience.