10/08/2023
Following church today, we had the TeamJacobWV "Room that Love Built" dinner and auction! We made over $7000 on knives (donated from various forged in fire contestants) for Jacob's new room addition.
Afterwards, we headed back to Ohio State for the next ION363 dosing. Marco was able to draw Jacob's blood on the first attempt! This is amazing and an indication that he is definitely improving!
10/07/2023
Jacobs speech is getting much more difficult to understand. The atrophy has moved into his tongue. Combine this with the forced air from his ventilator, and it is simply getting more difficult to understand his speech. Dr. Kolb made notice of a ruffling in Jacob's tongue back in August. We continue to pray, but as the ALS progresses, our prayers tend to change, based on the importance at the time.
10/02/2023
Today, during Jacobs massage, Pam found new muscle mass in his upper thighs!
08/15/2023
Back home from Ohio State. Almost immediately, we notice new movement in Jacob's legs! The movement of his legs increase for the next several days. It is not a hugely significant amount of movement, but we are grateful for any signs of returning strength.
08/14/2023
Back to Ohio State University for the "Loading Dose". The loading dose is the second dosing after beginning phase 2. It's called a loading dose, because if Jacob was on a placebo for phase 1, it will be the ion363 drug. If he was on the ion363 drug for phase 1, the loading dose will be a placebo.
This is to ensure he is not given too much of a good thing. Also, the loading does consists of the exact amount of CFS fluid that is removed. In other words, 20 cc out, 20 cc back in.
08/12/2023
Our second annual off-road ride was twice as productive as our first! We brought in over $20,000 cash, with another two to $3000 in various prices and services. We hosted this years event at the public land, known as Sanderson. This will likely be our venue for the next several events due to its popularity with the off-road community.
07/31/2023
Monday - Around 2 PM today, Jacob had to go to the restroom. I disconnected his respirator and moved it with him to his shower chair. After he had finished, I cleaned him up and returned him to his recliner. As I moved his respirator back to his side table, I noticed a visitor, Deb Winters, pulling into our driveway. In my haste, I neglected to plug his respirator back in, leaving it on battery power.
Later that evening, Jacob decided he wanted to take a drive. Mom grabbed the Astral respirator, and assumed I had just unplugged it. We made it approximately 20 miles from home before the battery warning started beeping. I turned around immediately, jumped on the interstate and drove 80 to 90 mph all the way down I64 to get home. A tractor trailer exited the St Albans exit in front of me, so this forced me to take the next exit, which ended up being much better for us anyway. As we exited the interstate, the battery finally quit, and the respirator shut off completely.
Mom was calmly rubbing Jacob's chest and trying to keep him relaxed and taking very slow, shallow breaths, but approximately 6 miles from home, he lost consciousness. I continued my 80 to 90 mph speed across Route 34 and into the town of Winfield! Mom what is performing CPR. I was blowing the horn and flashing the lights and weaving in and out of traffic as I dialed 911! Jacob was dying, and nothing we did could stop it! My 911 call put the Winfield volunteer fire Department first responders at our home just moments after we arrived! Mom had already ran in the house to grab his charger as both of us continued doing CPR! When the first responders arrived, they immediately swarmed Jacob and worked for 30 to 40 minutes, trying to save his life!
Finally, Jacob began to regain consciousness. They took him by ambulance to CAMC Teays, where Jacob receive numerous tests, scans, and IVs. We return home early Tuesday morning and, praise.Jesus, all is well!
Shortly after this event, we were showered with gifts of car power inverters, home battery backups, and additional charging cables.
This event was a combination of multiple mistakes made throughout the day. It was a valuable lesson learned, one that... unfortunately poor Jacob got the worst of, but a valuable lesson just the same.
We now have multiple battery backups, even a whole home generator, to ensure this never happens again.
