10/29/2024
Check up at Dunbar medical. Dr Trump is very pleased with Jacob's vitals. Other than ALS, he is in perfect condition.
Monday, October 28, 2024
10/29/2024 Telehealth Call Dr Nusair
10/29/2024
We had a telehealth call with Dr Nusair today, our infectious disease specialist with Marshall Health. He scheduled our next visit for March and will remove Tobramycin at that time. He is very pleased with Jacob's progress, and sees no need to continue the drug much longer.
Sunday, October 27, 2024
10/28/2024 Bridging Voice Zoom
10/28/2024
We had our second call today with bridging voice .org. Today's meeting was once again with Lane Rials, and her supervisor, Nachum Lehman.
Using my iPhone during the zoom call, Nachum was able to examine Jacob's eyes and determined that he was likely suffering from dry eye. This was the first official indication that we have had on this. Barb and I had assumed this was the issue, but now having this professional opinion confirmed our suspicions. He went on to explain several options to us, the best of which was the use of scleral lenses.
Scleral lenses are large rigid-surface contact lenses that are custom designed and computer lathed for each individual patient. Since these medical devices require proper evaluation and are prescribed by a licensed and skilled eye care practitioner, we had to search for the closest provider to our area. The first one was in Pikeville KY, but I was able to find another at Ohio State University (same distance). Because of our relationship with OSU, we elected to schedule the appointment there.
Monday, October 21, 2024
10/21/2024 Bridging Voice
10/21/2024
Since the beginning of September, when Jacob contracted COVID, he has been struggling with his eyes. We believe he has a severe case of dry eye, as well as weakness in the muscles that control the eyes. These issues have affected Jacob's communication. His eyes can no longer effectively control his eye gaze device, so we reached out to Team Gleason for help and possibly replacing Jacob's device.
Team Gleason connected us with an organization called Bridging Voice. We had our first call with this organization today with Lane Rials. She discussed with us certain options that could possibly be available to Jacob but wanted us to have another meeting with her supervisor, Nachum, first. It was a very productive call, and left us very excited.
Friday, October 18, 2024
10/18/2024 PEG TUBE Replaced
10/18/2024
It had been quite some time since we had Jacobs feeding tube replaced, so we scheduled this appointment as soon as we could, which ended up being the day after returning home from his treatment. It was a lot for him to endure, but Jacob is a trooper! While we were at Cabell Huntington Hospital, we were fortunate enough to meet Levi and Crystal Bragg! Levi is another ALS patient and Baptist Church pastor! He and his wife had prayer with us in the waiting room prior to his treatment and Jacobs Peg tube replacement. God is good!
Wednesday, October 16, 2024
10/16/2024 TREATMENT #13 ION363 (#7 in Phase 2)
10/16/2024
Treatment #13! Everything went well, blood work was good. Doctor Kolb had a little difficulty finding the "sweet spot" in Jacob's back, resulting in several attempts. This caused a little bit of back pain for Jacob the next day. We gave him Tylenol, which seemed to take care of the problem. His leg pain would persist, like most treatments, through the 19th.
Wednesday, October 9, 2024
10/09/2024 BLOODWORK at Dunbar Med
10/09/2024
We went back to Dunbar medical for bloodwork to test the white blood cell count again. We are now 30 days past our intended dosing visit of 09/10/2024.
The results came back at 14.3, still not ideal, but definitely showing a downward trend. Weather this is a result of actually getting better and finally over the Covid, or the introduction of the tobramycin, we will take it!
Ohio State University has rescheduled our appointment for next week on October 16, five weeks from our intended dosage. We are excited!
Tuesday, October 1, 2024
10/01/2024 Begin Tobramycin
10/01/2024
We are a week early, but in light of the white blood cell count, and the fact that we already have the medicine on hand, Dr Al Ourani and Dr Nussair both gave us the go ahead to start the medicine today.
10/01/2024 Marshall Pulmonology
10/01/2024
Today we had our appointment with Dr. Al Ourani at Marshall Pulmonology. Contrary to all the recent negativity, he tells us everything is GREAT! There have been very little, if any changes, in Jacob's health over the last six months and he is very pleased with Jacob's current condition.
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