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."
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.
