Dancing the Same Dance

The “Two steps forward, one step back” waltz continues at our house. We watched as Abbie’s voltage dropped to 5 last weekend and landed back down near 2 again this week. We think we know why this is happening, and we are in the midst of the process to solve it permanently, which makes is much easier to see discouraging numbers come up on the screen. In 3-5 weeks her liver should be in much better shape, and we should see her numbers start to rise again.

We took the MEAD (voltage measuring device) to PT with us on Thursday so we could show Lynette how it works. She thought it would be interesting to measure before and after therapy, so we did. Even though Abbie’s voltage was pretty much in the basement at the start of the session, it did go down a little afterward. We expected to see this as her hard work during PT drained energy from her. This was a good illustration for us to see, though, and influences me to do mellow things with Abbie right now…a lot of work on vision, hearing, sensation, speech and not so much on gross motor.

As I said, all this is easier for me to take because I know where we are going and can see there is a way out for Abbie. But, that doesn’t make Abbie free yet. We were waiting to go into therapy and there was a little girl in the midst of a session who was supposed to be practicing running down the hall. She was quite a rascal, laughing incessantly, and not exactly task-oriented. The therapist put a big yellow dot on the hallway floor and told her to run from that to the therapist to get a sticker. She finally did right before we went into Abbie’s therapy session. On the way to the car I told Abbie, “Pretty soon that will be you, running from the yellow dot to get a star sticker.” Big tears began rolling down her cheeks. That running practice can’t come soon enough!

Koo Barnes posted a very interesting article on her husband Chris’s site. http://www.guardian.co.uk/g2/story/0,,1870171,00.html#article_continue
The lengthy article detailed the effects that the sleep drug Ambien is having in people who are minimally responsive or in vegetative states. For about 60% of recipients, dramatic changes begin occurring within 30 minutes of taking the drug. While I don’t think I will consider giving this to Abbie, there were a couple of very interesting points raised. A man named Louis, who is typically in a minimally responsive state, is able to converse normally after taking the medication. He was asked if he feels a difference in awareness before and after taking the pill. He said “no”. So, on the inside Louis feels exactly the same and has the same level of awareness…which fits exactly with what so many brain injury families feel, that our loved ones are “right there”, just unable to communicate effectively. The second point I noted was that after observing “miraculous” changes in people like Louis, doctors did some imaging to figure out what was actually happening. After being given the medication, areas in patients’ brains that had showed up black and “dead” on previous scans began to light up with activity. Hmmmm…perhaps they weren’t “dead” areas after all. The researchers have begun to theorize that the traumatized brain cells may go into some sort of hibernation controlled by a neurochemical called GABA. So, all those ugly scans that we, and many other families, have had to endure may not be as black and white, literally, as we thought. There is so much hope!

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