07/24/2023 New Leg Movement

 07/24/2023

Legs stopped hurting Friday night. Today… We have new leg movement! Swinging his legs back-and-forth in his shower chair! Video available on Facebook below!

https://fb.watch/pyLAJk3Gmj/

07/22/2023 Legs Hurt

07/22/2023

Every lumbar puncture, except one, has resulted in leg pain. Treatment number 6 resulted in a headache, but every other treatment has been leg pain. This one is no exception. Jacob's legs ached for three days following this lumbar puncture. Finally subsided on Friday night.

07/18/2023 Follow Up

 07/18/2023

Jacob's follow-up was perfect. Dr. Kolb took a voluntary skin sample from Jacob for an additional study. Biorepository and Brain Bank Study.

The idea is to grow the skin cells from an ALS patient and use that on laboratory specimens to help find a cure!

07/16/2023 #7 ION363 Dose.

 07/16/2023

Back to Ohio State University! 

In phase 1, there was a one in  three chance that Jacob was receiving a placebo. In phase 2, the placebo possibility is completely removed, leaving only the actual medication from here on out!

Dosing is scheduled for Monday 7/17... everything went perfect! Jacob's hydration is great. We are due back tomorrow, 7/18 for follow up.

06/17/2023 Parade of Steam

 06/17/2023

One of Jacob's favorite annual events is the Cass Scenic Railroad Parade of Steam. Jacob made sure, during his peg tube surgery, to ask his nurses and doctor if it would be OK for him to go to this. They assured him it was fine and also told mom and I that it was OK. 

So today, we had a very good day at the Cassie Parade of Steam!

If you are interested in the Parade of Steam, please take a look at our very brief video from this year's event.

https://youtu.be/h8EqVzJKHFo?si=vamv5m5lt0K4E14z

06/12/2023 Feeding Tube

 06/12/2023

Jacob's continued weight loss and fear of choking led to PEG tube placement. We were concerned about the surgery and anesthesia, but once again, prayer and God's mercy prevailed! The surgery was performed at Cabell Huntington Hospital and, other than a little bit of soreness, there were no issues whatsoever. Home health care (Tyler), visited us for the first few weeks, but determined that we did not need their assistance and discharged us. Jacob took three cartons of Jevity formula on the first day, and four cartons on the second day.

05/15/2023 More Blood Tests

 05./15/2023

New blood work at Dunbar medical shows the liver enzymes (ALT) down to 203.