Since there are several things I need to cover, I’ll put these into a list again. I hope you don’t mind that I do this once in a while.
Since the decrease at noon yesterday, Ryan is tolerating it well. He showed no discomfort overnight and seemed to sleep quite well. Unfortunately though, he doesn’t appear to be any more alert. I’m going to see what the day brings as he receives more therapy.
There’s an opportunity (nurse will be in the area) to reduce his baclofen again as early as the ninth of this month. I’m seriously leaning toward doing it… if nothing adverse crops up. I’ll be in a better position to make a decision later in the week.
Yes! Grace Rocks Founder Recognized
The Women’s Council in Danbury, CT chose Jane Martellino to receive the first “Heart of Women” award. The award symbolized the “inspirational commitment made on behalf of individuals less fortunate than yourself and whose lives have been forever touched by your generosity.” I know Jane is a humble person and would never take credit for her great work, so I’ll let you know that she brings awareness to the never-ending rehabilitation of people with brain injuries or tumors. She shares her message that all acts of support, no matter how small, help.
Also, her organization is able to give out many grants because of their annual holiday card sales. Please, visit her site and order your cards from a caring charity. They’re custom designed and really quite attractive.
The urinary tract infection is history. We tested his urine last night and it was free of white blood cells (leukocytes).
It’s better, but not gone. One thing occurred to me is that the vascular appearance might not be a “rash” at all. Perhaps it’s his blood being too thin and pooling when seated? I made some calls and, yes, this is entirely possible. A few weeks out (and off the blood thinner) might confirm it.
Ryan’s Wish List/Store:
I thought this might be a good time — with the holiday shopping season looming — to remind you to use the Store to make your gift purchases. The Store is not just to help buy items for Ryan’s care. It’s entirely administered by Amazon and Ryan gets a small percentage of each sale referral. Just like Yes! Grace Rocks site, it cost you no more to shop through the website’s portal. Hey, you need it anyway and why not give some help along the way?
Sleep Study Feedback
We received our first snippet of feedback from the International Brain Research Foundation (IBRF). I am encouraged by the directness of the response.
“I was struck by how much of a normal sleep profile there was… the fact that there was any REM at all, for instance. Even in those with significant but much less severe TBI, we see interrupted cycles and reduced delta and REM.” – Dr. Jonathan Fellus, IBRF
- Sleep Study Explained (ryansrally.org)
- Today: Baclofen Reduction Again (ryansrally.org)
- Sleep Study Received (ryansrally.org)
- No. Not Again: UTI Develops (ryansrally.org)