As I said in my previous blog Kelley and Sean are doing lots of biking these days. Since this is assisted biking and they are going for so long (10+ miles some days) Sean has figured out how to hook his bike up behind kelley's so they are kind of doing a tandem thing. Thought you might enjoy the photo. Also want to get the word out about another fantastic river trip offer. Ken Streeter is offering a 4 day Rogue River Trip for $750, from September 16 through September 19. If you are interested in learning more about the Rogue River, or signing up for this trip , please go on Kens website at www.wildernesstrips.com. Spaces are limited, so this trip may fill pretty quickly.

Haven’t seen Kelley in a while, but we have been in touch. Her last email sounded very positive. She is able to crank a spin bike in the gym for 15 minutes on her own, and has been doing long hours of walking in her braces and walker, and assisted biking on her tricycle. Sean is still working with her almost every day, and at this point is working just for basic living expenses since we have run out of money in the NTAF account. We have planned some rafting fundraisers for this summer to help eventually reimburse Sean fairly for his invaluable role in Kelley’s recovery program. She has a relatively narrow window of opportunity to make the recovery that is possible for her, and this daily intensive training with Sean is the key to making the most of the ultimate outcome. We think the next 6 months will be especially key.

The raft trips being offered through the generous offers of outfitters are a two day Tuolumne trip on August 27th and 28th , and a one day + camping trip on the South Fork of the American on July 31st . The South Fork trip will have a women’s trip group, as well as a separate kids trip group. If you are interested in either of these trips please contact Zephyr Whitewater for the Tuolumne Trip, and Mariah Wilderness Expeditions for the South Fork Trip, or you can contact me at susannorman@att.net for more information. We also may need a few more volunteer guides for these trips, so please contact me if interested in doing that as well. I know I had said it before, but I will say it again, Kelley’s focus and ability to work through (and sometime having to just wait out) the nerve pain is something I think about almost every day, and keeps everything in my life in perspective. Makes the challenges I face in my life seem so easy in comparison. Keep sending her those positive vibes. Happy Solstice, Sue

Kelley saw many of you river folks recently at a memorial gathering for our friend Lars, on the banks of the American River. Was great to see such an incredible gathering of the river community, and sad and powerful to hear and share stories of our friend Lars. It was also great to keep looking over at Kelley and see her surrounded and visiting with so many of you. Her life is currently very isolated in some ways, and she misses the river and its community tremendously. Hopefully now that she is driving she can get out more. Thats right, Kelley drove up in her "accessible" van from Sacramento, and picked Julie, Lisa and I up in Coloma, and drove us up to Chili Bar for the memorial. It was her first big outing in the van, and it was only after I got out and really started looking at the hand controls, that I really realized that naviagating the steep curvey descent down to Chili Bar, is a bit more challenging with that set up, then regular cars. The gas and brake are on the steering wheel. But she did great (of course).

So unfortunately our San Juan River Trip fundraiser had to be cancelled, (lack of sign-ups) so am working on other local options instead. Keep tuned, next blog will hopefully announce dates for South Fork American, Tuolumne, and Rogue River fundraising raft trips. Finances are tight,and would like to try and keep that from getting in the way of Kelley's progress. Kelley is still making hard fought progress,with the amazing Sean. I asked Kelley to send me this letter she got from Sean, after she had had a particularly bad day fighting nerve pain, so she could do some physical therapy with him. Their work together is hard, painful... and beautiful....

"Hi Kelley,

Here are some photos just were taken after the big pain during the whole hard day, I don't think it's a bad day, it is still a recovering day and developing day.

Remember, we are making a miracle!

Don't worry about the money, it would not stop the miracle.
Don't worry about how fast or how slow it is, it's not our business, it's God's business. Our business is Keep going, going and going, never stop!
Please clear your mind, concentrate on it!

What is miracle? there are many ways to explain. one way is below.

it would not happen today, many people stop at today;
it would not happen tomorrow, many people stop at tomorrow;
it would not happen next week, many people stop at the week;
it would not happen next month, many people stop at the month;
it would not happen next year, many people stop at the year;
it would not happen in the time people expect;
it would happen when people completely forget ask the time, only concentrating the hard work, ....

See you tomorrow,
Sean"

I visited with Kelley this past weekend. She and Sean have been continuing to make progress. She walked for about 15 minutes, with her leg braces and walker from the living room, through the kitchen around the bedroom and back. Her progress is slow but deliberate. This is still walking for therapy, doing weight bearing exercise to rebuild nerves, muscles, connections…so that eventually she can walk for transport. After some massage and exercise, Sean then took her out on her new tricycle. Kelley straps her legs into this 3 wheeler, and with Sean providing a slight assistance by pulling on a strap, Kelley peddles.. The nerve pain is still bad, though it cycles with good days and bad days. But Kelley continues to never take a pain free moment for granted, and uses those for all she’s worth.
I am continuing to work on some fund raising events for her (San Juan River Trip, maybe a film showing in Truckee). Her NTAF fund is currently tapped out. Sean works at a very good price, but because he works with her so much, it still adds up. If you feel like you can help out, please send a contribution to her NTAF account, following the info presented on the side bar of the blog. Sue

Kelley has been spending more time in her leg braces, as you can see in the picture. But the last couple months have also been preoccupied with her fathers failing health. After visiting him for a week several weeks ago, he passed away last Sunday from cancer. She went back up to Montana to try and see him before he went, and has spent the last week with her Mom. We also just found out a good friend of both of ours has also passed away from a very aggressive cancer. A very sad time.

I would also like to let everyone know about a river trip that is planned this year as a fundraiser for Kelley, through Canyon REO, on the San Juan River. We had a very successful fundrasing trip last year with OARs, and Donnie wants his shot at contributing too. However the focus of this years trip will be different. For one thing Kelley is going to make every effort to go, accompanied by her Mom and a family friend, and hopefully Kurt and Sean. So besides doing a trip with Kelley and her loved ones, we are going to make the focus of this trip, a parent trip, for those of us who are realizing we may not have much time left to do this kind of cool thing with our parents. The San Juan, for those who don't know, is a beautiful and mellow southwestern river canyon. The launch date is June 16th, with 3, 4 and 7 day options, the price is $800, and Donnie is donating all profit to Kelleys fund. If you would like more information about the river, please google the Canyon REO website. If you are interested in signing up for the trip, just email me (susannorman@att.net) , and I will send you the waiver forms, and deposit invoice needed to get you started. We are looking for a $250 deposit by mid April. Remember to tell those you love, that you do.... Love, Sue

Well we had a fundraiser for Kelley last weekend here at the Lake Tahoe Community College. Showed the 3 Women/3 Hundred miles DVD and our outrigger canoe club hosted a social mixer with appetizers and soft drinks before and after the movie. Almost sold out the 200 seat theatre. I have been hearing all week how moved my friends and co-workers were by the film and her story. Very generous donations were received which will help replenish Kelley’s NTAF account. If anyone reading this blog wants to host a fundraiser please feel free to contact me. I can line you up with a DVD, info for setting up donations through the NTAF, and possibly free event insurance (if held in California). The best part is Kelley came up to attend the fundraiser, and visit with folks afterwards. I also got a chance to meet Sean finally, Kelley’s full time therapist, coach, and ‘angel’. He is a gem. So attentive and focused on Kelley’s needs and capacity, and a personality full of exuberance and light. The next day, Sean did a workout session in the morning with Kelley at my house, then we took a drive out to Emerald Bay to show him Lake Tahoe. Kelley can practice standing with a Walker now in her leg braces, so she doesn’t need to travel with the easy stand to get the weight bearing exercise she needs on her legs when she is traveling. My floor was a little to slippery for her to walk with the Walker, but she does do this at her home. She also told me this week that she went to the gym and was able to turn the pedals on a spin bike on just her own power. So the gains continue, slowly but surely. The photos with this blog are of Kelley doing some pool therapy, and she can “pedal” her legs pretty well in the pool too. So the gains continue, slowly but surely.

January 6, 2008

Well its along time since the last post, but wanted to wait until I got some good beta about the trip to Johns Hopkins Hospital by Kelley and Kurt. Kurts description is below, and the photos show Kelley standing and walking in her new leg braces, and working through some nerve pain with her love cell Wilbur. Nothing like a little puppy love to help you through the tough times. Sue.

Kurts says: " Our trip to Johns Hopkins was very positive overall. We went to two different centers. One was for physical rehabilitation (Kennedy Krieger Institute) and the other was the formal Transverse Myelitis medical group at Johns Hopkins Hospital. Both centers did a full workup on Kelley, including bone density scan, Optic nerve testing, full bloodwork and another spinal tap for a special test. We are still waiting on several of the results. However, all tests that are concluded show that Kelley is very capable of performing the hard work she needs to do in order to recover. Kelley had a full week of physical rehab at the Kennedy Krieger Institute. She learned several new exercises there and came home with prescriptions for an improved wheelchair backrest and seat. Most importantly, they also prescribed an electronic muscle stimulator unit. This will help Kelley combat muscle atrophy during the time that she needs to regain motor function. At both facilities, we welcomed the staff's willingness to look at Kelley from a fresh perspective. And although there are so many variables and mysteries about Kelley's condition of Transverse Myelitis, we did feel comfortable that these people really know what they are doing. I think that the greatest and most lasting impression gained was the positive energy that everyone projected towards Kelley's recovery. Nerve pathways can grow back in time, and the limits to this are very much related to the individual's capacity for very hard work. Getting such a positive a feeling from the staff has raised Kelley's own determination to an even higher level."