10/11/2023
Almost every lumbar puncture has resulted in this leg pain within a couple days of the treatment. This one is no exception. Jacob's legs ached for three days following this lumbar puncture. Finally subsided on Friday night (exactly as before).
10/09/2023
We drove back to Ohio State University and received our 9th Jacifusen treatment today. Everything was perfect! Jacob's breathing is improving, and so are his muscles! The ruffling in his tongue is still there, and his speech is becoming more and more difficult to understand. This is largely due to the high pressure air being forced through his airways, via the Astral noninvasive ventilator. When the ventilator is off, his speech is easily understood. Unfortunately, you cannot be left off for more than just a few seconds, due to the weakness in his diaphragm.
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, Jerry Jacobs, massage, Pam found new muscle mass in his upper thighs!
