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)
What’s up, I read your new stuff regularly. Your story-telling style is awesome,
keep doing what you’re doing!
Kathryn Beggs Howlett says
ordered some cards!
Pittsburgh Here says
Ken- I like the way you itemize things. Since I am not medically inclined, I understand the situation(s) better BECAUSE you break things down. Thanks for that, and thanks for being so open and honest about everything; you’re an amazing dad and husband!
Carla Liberty says
Speaking of music……. We have a Karaoke Fundraiser for Ryan on Saturday December 17th at the Mediterranean Breeze in Herndon, VA (it’s actually an all-day event, but the karaoke portion will be in the evening)….why not join us and support Ryan in the process? There will be goodies from WMZQ, raffle prizes, silent auction, gifts for sale, Rally bracelets for sale, lots of food/fun for the entire family. More information to follow! I’m thinking of naming it:
LET YOUR VOICE BE HEARD FOR RYAN. Any other suggestions for names?
Still here – NGA, RKD FTW!!!!
Carla, please put together a short promo (or should I use your comment above?)and I’ll post it on the home page.
Carla Liberty says
Ken I have a flier that I put together today…will send to you 🙂 Already have lots of prizes and goodies lined up!
Vicky Scott says
Great news about the Baclofen reduction! Sometimes it takes awhile to see results as another of your peeps wrote. It takes a while to detox from the body. Love the possibility of the alternative answer to the rash. It is amazing when the epiphanies come. One thing for sure, if there were going to be a rash, there is probably enough cream in that area to keep it a bay!
Ken, I’m wondering if something other than the routine therapy might stimulate Ryan? I’ll throw this out there and you can decide whether it would be worth it or not. Find some good classical/instrumental/movie sound track music and play it fairly loudly for Ryan. As you do so, gently take his hands/feet and move them in time to the music. I don’t know if you’ve ever tried such a thing, but never know what might reach him.
I was just wondering about this very idea! Must be the ESP at work again. Next question for questionaire, “Who is Ryan’s favorite country music singer?” Yes, I know the answer! 🙂
Love to all, especially Gail, who has no power up there in NY. Rough storm —
Jo, I already asked that… the answer was Kenny Chesney.
He loves Jay-Z too!
Thanks for the update Ken. Stay positive. Things are improving….
Love and prayers are always here for Ryan!
Much love, Peggie
Gail Doyle says
Ken ,Update sounds like things are going a little more smoothly for Ryan and you and I hope it continues,you all need some good news for sure. Say hi to Ryan and give him a big hug and keep those posts comin’ in. Love Gail
It sure sounds like things are looking positive for Ryan! It’s great that the “official” sleep study report confirms the fact that Ryan does have a somewhat normal pattern, and very promising that they found it surprising. I’d commented that he was in uncharted territory, and that seems to prove it. Hopefully you are on the right track and the red rashy area fades away more after the blood thinner was discontinued. Here’s hoping you’ll see an improvement in his alertness once there’s been sufficient time for his system to adjust the Baclofen reduction .