I’m not really sure of what to make of the IBRF call yesterday. On one hand, they lead off with “not much has changed”. This is not good. On the other, they tell of measurements that show some progression. I’m doing my best to figure this out. It was very confusing.
Most notably, the qEEG (might have) showed two new things:
- Ryan can discern between “normal” audible tones and sounds that are “out of place”. If this is the case, there might be some sign that Ryan is regaining some cognition. Then again, there might not.
- “Ryan might be able to see more than we thought”. That was the quote from the doctor. Before we get too excited, this doesn’t mean he understands (or processes) what he sees. It only means the stimuli is reaching the cortex.
So, what can I conclude? Ryan is not getting worse. That’s for sure. In fact, he might still be healing. That’s not for sure. I guess I really don’t know much about anything, now that I think about it. It’s just so frustrating! Sue and I haven’t gotten together to discuss what we each took away from the call. Talking to her might help clarify information.
One thing I am doing is requesting another reduction in baclofen (from 175 to 155mcg). Ryan tolerated the last reduction well and I want to keep aggressively pushing forward. Another thing is I’m reopening the discussion to have the scar tissue remove from Ryan’s eyes. Hey, if he might be seeing “more than we thought” than I am compelled to remove any obstacle that might slow recovery.
- IBRF Visit Recap (ryansrally.org)