Sunday, June 30, 2013

6/30/13 Update

It's been a while since I've given an update on Alison. She's doing well, as am I. She's been doing full days of therapy twice a week at the Rehab Institute of KC, and that's been good. We really like the speech therapist, but everyone's been great. It seems like she's showing progress, but sometimes it's hard to tell. I felt some new movement in her right leg this morning, and her right hand continues to show subtle signs of life too. She's even trying to vocalize more often and work on controlled breathing and mouthing words more too. And she did a nice job of helping me roll her on her side, and back, this morning too - another thing they've been working on in therapy. She's also been spending some time in the assistive tech lab - two full hours last Thursday! I've not been able to see it first hand, but I heard she's been painting (using her foot through the computer) and also trying to surf the web rather than spelling when they ask her too. : ) I'm looking forward to seeing all of it tomorrow when I'll go with her. There is another thing we're pretty excited about as well. We've been talking with the Chief Medical Officer at the International Brain Research Foundation (www.ibrfinc.org) in New Jersey to see if they might be able to help Alison. They're a cutting edge organization of the top minds in the world who are committed to finding cures and better treatments for brain injuries and diseases. They're main claim to fame is that they've successfully woken up like 50 of 70 patients who were comatose. They are creative, innovative, outside the box thinkers who have grown tired of waiting for the rest of the medical field to make progress in this critical area. They've worked directly with the National Institutes of Health and the Department of Defense to help wounded veterans returning from war with serious brain injuries. It's really quite impressive. They're approach is aggressive, but fairly low risk. The brain is electrochemical. So they use external electrical stimulation and an aggressive cocktail of medicines, supplements and herbs to address the chemical side and essentially jump start the brain. We feel it could offer us the best chance at accelerated progress, versus staying on the current track that is very slow, and could come to a halt at any point. The catch is this: it's really expensive, and not covered by insurance. If it's something we chose to pursue, we'll have to do a massive fundraising effort and give it all we have. But we're still contemplating the decision, and should know in the next couple of weeks. Otherwise, all is well for us. We don't really have any plans for the 4th, but I'm off work so we'll be hanging out. Thanks for all of your continued support. 

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