09/30/2024 Assistive Technology

 09/30/2024

We had an appointment today with assistive technology department at Ohio State University. Jacob was scheduled to try out the Eye Gaze *Edge and the Tobii I -13. OSU was not able to effectively test the Edge Device because they locked the correct mount for it and the I -13 did not work at all. Even with his dry eye syndrome, he still prefers his old TD Pilot. I think it's just what he's used to using. 

The ladies at OSU made some substantial changes to his device, trying to help him focus, and have better luck at communicating. However, when we arrived back home, Jacob made me change it all back, making this trip a complete waste of time.

On a sidenote, I was able to reach out to Team Gleason, who informed me they had an *Edge device in their closet, which we could try for a while. They are preparing it for Jacob and will be sending it out soon.

09/26/2024 Back to Dunbar Medical

09/26/2024

Jacob seems to be doing fantastic. We returned to Dunbar medical today for more blood work. Once again, we were devastated with the results being exactly the same as last week... 17.4. 

Dunbar medical ordered a urinalysis and chest x-ray. We were able to get a urinalysis at LABCORP on the Dunbar medical premises. However, the chest x-ray had to be done elsewhere, so we went to Marshall Health. Everything came back perfect, with no issues whatsoever. Sadly, Ohio State University will still not allow Jacob to receive his treatment until they see the white blood cell count trending downward. We are now two weeks past his initial 09/10 treatment date. 

09/17/2024 Dunbar Medical Visit

 09/17/2024

At Dunbar medical today, we saw Jenny, a nurse practitioner. Due to Dr. Trump's own personal health issues, he made the decision to keep his distance. Jenny determined that Jacob had a slight ear infection on his left side and the blood work shows a still very high white blood cell count at 17.4. We will have to retest next Thursday after a week of the anti-biotic, levofloxacin.

09/16/2024 Procudure is CANCELLED :(

 09/16/2024

Today was supposed to be treatment #13, (#7 in phase 2). The procedure was canceled. After bloodwork and vitals, Jacob's temperature was still slightly elevated at 100.9°. His white blood cell count was elevated to 16.9, with normal being somewhere around 9 or 10. Ionis pharmaceuticals canceled the procedure and sent us back home. 

Dr. Kolb was not his normal chipper self. He told us Jacob seemed weaker and did not seem as positive that the treatment is working. We feel like this is all related to Covid, but we are disappointed just the same. 

We will have to see our family doctor tomorrow to evaluate.

09/15/2024 Finally over Covid

 09/15/2024

It appears that we are all finally over COVID-19. There is still some coughing and slight sinus drainage, but otherwise we are all better! We leave today for Ohio State University, and Jacob's bloodwork for tomorrow's highly anticipated treatment.

09/10/2024 STOPPED Tobramycin

 09/10/2024

Today ended our 28 day tobramycin regimen.

09/07/2024 OSU Treatment Heartbreak

 09/07/2024

We had to postpone our trip to Ohio State University for Jacob's 7th treatment in phase 2. Barb and Jacob both appear to be over the Covid, but ol dad is still infected after a second Covid test. The plan is to head out on September 16th.