November 24 Update

Just wanted to post these images and another update before I leave on vacation for a couple of weeks. These photos were taken by Kurts mom Lou who was out visiting during my last visit, of the amazing hand bike (and amazing Kelley). I talked to Kelley this weekend and her time with Sean, the new full time therapist has already been extremely valuable. She sounded more positive then I think I have heard her since this whole thing began. He is doing physical therapy, massage, reflexology (on an almost daily basis) and getting definite results. She said her movement, sensation, and muscle tone, have all noticeable improved. And he fully believes she will walk again. It was so exciting to hear the excitement in her voice. One of the things I have always valued in my friend Kelley is her ability to "work" when we were pursuing atheletic goals in the past. She just never held anything back. It always pushed me to go a little harder myself, to see her laying it down like that. And watching her work over the last several months, believe me she still has that strength. But I think the lack of consistency, because of the lack of continuity with us well meaning but unskilled (and sometime unavailable) friends was holding her back. I think Sean is allowing her to work at her full capacity, in ways that are balanced and progressive. I can't wait to meet him and see her improvement with my own eyes. Anyway Kelley will be going back east to the Johns Hopkins Transverse Myelitis Center during the 3rd week in December. I will post after I get an update from her after that experience. In the mean time drop by or drop her a line if you get a chance...and keep the vison of kelley walking in your heart and mind . Sue

November 15 Update

Well another eventful month has gone by… ..This photo is a mold of Kelleys legs, that will be used to make her some high tech leg braces so she can safely start walking again. At first this will happen between parallel bars , and then….. beyond…... Kelley continues to work hard at her PT, in between pain management, which is still a constant challenge.

She recently got a great new recumbent hand bike, will try to get picture of that next time. We did go out about a week ago for its first outing. She can ride right from her house to the bike trail along the American river. We got carried away and went out for about an hour and a half, it was one of those beautiful perfect fall days in Sacramento. Unfortunately some unused muscles got a little over worked and she’s been having to tend to some tweaks in the neck, going to have to taper a little more next time. But she can fly in that thing.

And she also now has some fulltime help for awhile. A few blogs back I told you about a woman named Margorie who also has TM, and has had remarkable recovery. A lot of her success she owes to an interesting fellow named Sean (a chinese scholar, and self taught physical therapist) who came to work full time with her, integrating physical therapy with massage. He has recently finished up working with another client and now will be working for Kelley. He will be living across the street from Kelley, and coming to work with her 6 days a week, 6+ hours a day. The consistency and professional capability Sean will provide for Kelley is going to be huge I think.

We will be planning some more fund raising events soon, to keep the coffers in Kelley’s NTAF account sufficiently funded. This will include a film showing of 3 women/300 miles in South Lake Tahoe, and scheduling some more donated outfitter river trips for next spring and summer. Keep in touch with this blog for more news on that, as well as Kelleys progress over the next few months. She is still determined to walk again, and we invite you all to do what you can to help in that journey, whether its donations, your prayers, coming by to go for a bike ride, drive her to appts. etc.….Thanks, Sue

October 11

Well this past month has been busy for Kelley.... we went to Julie Mungers wedding at the end of September where she saw alot of people from many of the past worlds both Julie and Kelley have been a part of over the years. And of course many people who have not yet seen Kelley since this all happened. It was of course great to see everybody, but also frustrating to not have much mobility. The new wheel chair tires helped alot, but still pretty tough negotiating "natural" ground. We were both in the ceremony and it was truly special to be part of such a wonderful event in our good friend Julie's life. Afterwards Kelley came back to Tahoe with me, since Kurt was out of town for a few more days on a trip to Minnesota. Fortunately Kelley was able to bring her "easy stand" , a great machine that enables her to stand up right in a supported manner. So she was able to recoup some from the weekend, and start getting back into her exercise routine a little bit. Fortunately the weather was great, so Lisa and I took her to a handicap accessible trail next to Lake Tahoe at Taylor Creek. This trail is absolutely gorgeous, the kokonee salmon were in full spawn, and we even got to watch an 8 month old bear cub play around in the creek trying to catch a salmon for about 20 minutes. Its been the closest to nature I think Kelley has been since this has happened, and she was soaking it in....I then took her to her "killer" thursday, which starts with a visit to Dr. Zhu in the morning (gots lots of needles in her lower back for the first time), and then to SCI FIT. I am amazed at how hard they work her in her 2 to 2.5 hours there. Pretty much continuously moving from exercise to exercise, and much of it is supported weight bearing. The research is really showing that weight bearing exercises rebuild the nerve cells and brain connections more quickly, and Kelley continues to show progress. Her left foot can push pretty darn hard now, and she said that last week the trainers at SCI FIT really feel she has made some significant progress and can really see some quad engagement now. Unfortunately killer thursday is followed by painful friday, as it seems clear that the exercise does aggravate the pain response....and so it goes. The last news is that her adaptive canoe seat came in, and Kurt bought a 2 man canoe that is suitable for them to use. So they are hoping to take it out sometime this weekend. Although Kelleys life is not easy (and that is an understatement, believe me) she continues to focus on the positive and looking forward. Til next time, Sue

Sept 15 Update

The latest news is Kelley has purchased some new wheels, both vehicle and chair. She has acquired a handicapped accessible van, using the NTAF fund. It still needs a few additional retrofits for her to use, but hopefully within a few weeks she will be able to start driving herself around sometimes, and gain some independence she is more then ready for.

We will be going to Julie Mungers wedding in a couple of weeks, up by Taylorsville. So we also got her some more beefy tires for the chair, so it would be little more suitable for "off road use" in preparation for some cruisin around on Julies property. She said it already has been a noticeable improvement, as the tires grip better even on smooth surfaces, Then planning on her coming to hang out with "Team Tahoe" for a few days afterwards, since Kurt will be out of town for a few days. Plan on keeping her active and working out.. hopefully to include some Lake time.

I saw her about a couple of weeks ago as I was passing through town, once again there was small but noticable gains in her motor function, including increased movement in one of her feet, and definite firing in her left glut. Her home gym is pretty well set up for her to maintain her exercise regime, although of course it is always more fun and motivating if she has folks come by and visit and provide minor assistance while she is working out. So please do not be shy about offering to be a work out buddy. She continues to work hard, and still seeing gains for her efforts. Later, Sue

Pictures tell the next chapter of the story....

Well the pictures say it best, Kelley (with Wilbur et al. support) is continuing to work hard. The new PT facility has definitely got a good rounded program for Kelley to continue to work towards her goal of walking again, and overall strengthening. She is getting down there at least once a week, still may try to get two days in when she can. Also doing alot of time in the pool at her and Kurts new house. Water is a comfy 92 degrees so she can spend a couple of hours in there working on a variety of leg movements. And this past week she participated on Team California in the Adapted Mixed division at the World Championship Outrigger Sprints races in Sacramento. This is something that did not see very possible even a few weeks ago... but things got just good enough just in time. Needless to say she still has better form then most .... the Team Cali coach was blown away by her reach (Kelley is in seat 1). There were 6 teams competing (Hawaii (2 teams), Team Cali, Canada, Italy, and ?). Team Cali came in 3rd in the 1000, and 2nd in the 500. We will be ordering her an adaptive chair this weekend, that can be quickly locked into any canoe seat. The Pain is still a big issue, but Kelley's ability to just keep working through it is just unbelievable. In the over a month since I had seen her last, I can definitely see marked improvement in her overall strength, and small but noticeable improvement in her legs. Drop her a line when you get a chance and let her know you have seen the pic's,.... as we continue on this journey....

July 19 Update

I have not seen Kelley since the last blog, but she been getting some key help from others. Thanks Tiffany and Caroline for joining in the effort the last couple of weeks (and of course Maria continued commitment). The following is an exerpt from Tiffany's message on the caregiver site, that gives you an idea of what is going on...

"First, I wanted to thank Kelley and Kurt for welcoming me into their home. I enjoyed spending time with Kelley again. I know sometimes when a persons life is going through multiple changes (buying a new home, moving, and learning to
walk again) its hard to have house guests. It takes energy to explain all the new experiences with each and every person that comes in wanting to visit and help. I marvel at Kelleys strength and patience with herself and others.
She is putting her abundance of energy into healing, and getting herself moving again. She and Kurt are doing such a great job to get all the equipment together so Kelley can do the most physical therapy possible. Shes away from
her computer often, not because she doesn't want to communicate with her friends , but because she knows how to completely focus on her healing. She voices often her gratitude for her friends." ....Tiffany

Kelley more or less has a routine she is trying to maintain. Tuesdays and Fridays she is trying to spend in the east bay with either/and Dr. Zhu (scalp acupuncture) and SCI-Fit (focused therapy center for spinal cord injuries). These are long days...the rest of the days she is in Sac either doing PT at her local facility, at home, or occasionally paddling. The goal is to keep moving as much as possible, to bring the connections back between her brain and her muscles, and recover from the atrophy in her lower body. She feels like she is continuing to get stronger, and her latest activity has been crawling. As she says "it ain't pretty" but she can do it, and it works alot of core, upper body. and upper leg I assume.

Anyway do call her to check in.... particularly if you want to drop by and help her with errands or doing her PT. She doesn't have much time for plain old visiting, but there is usually always something you can help her with, and have the opportunity to visit at the same time. Thanks, Sue

June 28 Update

Well last couple of weeks have been busy for Kelley. She spent last week and weekend down in Santa Cruz and San Jose, spending much of that time at Dr. Zhu's office. Kelley does have some muscles in her lower body working ( I can see alot of hip, and some hamstring), and she is learning a whole regimen of exercises to continue to try to rebuild the connections between her brain and those muscles, and get them to work stronger and more reliably. It is hard, tedious work, and frustrating for her when she can't get the response she is focusing on. And of course this all has to be accomplished within the contraints of her medications and pain levels. The bottom line, it ain't easy.....

She also found out about a very progressive physical therapy clinic in Pleasanton (thru another patient of Dr. Zhu's) called SCI-FIT, which specializes in spinal cord injuries. She had her first appointment with them last thursday and was very impressed with what they were offering, with even more sophistication in an exercise regimen suited to her goals. So we are still trying to figure out the logistics that will enable her to get the treatment she needs, with a part time place to live in the East Bay, and more reliable coaches/trainers/care givers that can get her where she needs to be between SCI_FIT and Dr. Zhu's and help her with her exercise program.
Lastly, Kelley got some good news about her lastest MRI which she got on Tuesday. Her neurologist said it looks very good, with almost all the inflamation resolved her spine.
She has a week in Sacramento right now, but will be starting up again with SCI-FIT and Dr.Zhu towards the end of next week. We will keep you posted on her progress, and please send her your encouragement to stay strong...its overwhelming sometimes, but we are continuing to try to just take it one step at a time...... .
Sue

Need San Jose Housing

As it turns out the place we thought we had in San Jose, will not be available
for a few weeks, and after that would only work if Kelley had a more or less full time
companion. We are not sure yet if we will be able to arrange that or not. In the mean time
would like to explore other options. We are basically looking for someone who would be
willing to have Kelley as a part time room mate. She would have to be able to have a guest
sometimes, would probably only be there 3 to 4 nights a during the mid week, and the
house would have to be handicap accessible. If anyone has any ideas about this please let me know. If you do recommend some one please talk to them first before contacting me so I am not calling folks that have not been told what the deal is. If you do talk to someone who is interested in helping out with this please either email (rivgu@aol.com) or call 530-400-9888 with who I need to talk too. Thanks, Sue

Hold the Vision

This is the vision I would like everyone to hold for the next few months. This is Marjorie, the woman I told you about in the previous blog. Hopefully in the not to distant future this can be Kelley. Kelley is now on her 3rd day with Dr. Zhu. She did 3 hours on wednesday, 4 hours on thursday, and probably will do similar today. She is a veritable pin cushion of needles, going through a progression of movements. As an example , yesterday Dr. Zhu put her in knee braces between the parallel bars, with him sitting behind her on a stool, and had her balance on her own, and take a few steps forward and a few steps back. This guy is pushing her as fast as Kelley will go, and we all know Kelleys ability to "cowboy up" when there is work to be done. Don't get me wrong she still has a long ways to go, in the progression of where she will want to end up, the steps she took yesterday are little and she is using any muscle she can to make it happen. She has alot of hard work ahead to get to the point where she can walk across a room. But what she did yesterday is huge compared to where she was last week, and hopefully step by arduous step she will get there. Huge thanks to Barb and Jackie and Dan who have been with Kelley during these first critical few days with Dr. Zhu.

On another note, I think we have already found the perfect living situation for Kelley in San Jose, so thanks for the other offers, but we have found a fully handicapped accessible home that she can start using immediately.

Lastly I just heard back from George Wendt at OARS, and he has donated a little over $19,000 to the NTAF from our recent Yampa trip!. This could not have come at a better time. Very little of Dr. Zhu's bills we be covered by insurance, and even though his rates are reasonable, the sheer volume of time she will be there will add up. But at this point we should be in pretty good shape for a little while. Over the weekend I will be posting information on this blog regarding all the future fund raising raft trip options that have been offered by outfitters over the past few weeks. So stay tuned.... Sue

Big News!

Well folks some big news to report. We had a successful fundraiser in Santa Cruz last weekend. Over 250 people (sold out crowd) showed up to see the “3 Women” DVD, and bid on items in the accompanying silent auction. Many people contributed to this event in different ways, to many to acknowledge all. But several people need to be mentioned who were key. Jane Driscoll, Jackie Nunez, Barb Roetger, and Laura Bowly. These gals did the bulk of the work, finding auctions sponsors, creating and posting marketing materials, venue space, AV equipment, etc. Also thanks to Kim Powell (of Blue Water Adventures) for hosting a sea kayak trip earlier in the day, of which all proceeds went to Kelley. Our estimated “take” from the event was about $10,600.

But the best thing about the event is that I met Marjorie. Marjorie was diagnosed with Transverse Myelitis a little over a year ago. She is walking today. With the help of canes,but walking. Her story is remarkable. She was told by the doctors she had very little chance of walking again (1 in 13,000) and probably wouldn’t even live very long. She initially was more disabled then Kelley, as her arms and speech were also affected. The key to her success was initiated by a visit to an acupuncturist is San Jose, Dr. Zhu, Dr. Zhu told her after her first visit that she would be able to walk again if she was willing to work hard over the next 6 months. Which she did, and her recovery has been amazing and she is still working at it.

Dr. Zhu specializes in neurological disorders, and is at the cutting edge. After listening to Marjorie’s story it became obvious that Kelley needed to see him. I told Kelley about it on Sunday, she called and made an appointment on Monday, and had her first treatment (3 hours) today. I don’t know that much, but talked to them a little bit this evening. Barb and Jackie came up from Santa Cruz to be with Kelley and just help listen and absorb the information. Then after, Barb gave Kelley a massage and cranial sacral treatment. Evidently the results were encouraging, and Dr. Zhu is recommending that Kelley work with him 3 to 5 days a week 3 hours a day, for 3 months to start. I believe he was encouraged by what he was able to assess and stimulate regarding Kelley’s current function and her obvious ability to work her ass off.

Obviously there are a lot of details to work out, but this is the most hope I have felt for a long time. Kelley will need to be able to move down to the San Jose area for at least a few days a week for the next 3 months at least. If anyone reading this blog has any connections as far as possible accommodations please email me at rivgu@aol.com. Obviously needs to be wheel chair accessible. Also would like to develop a support network of folks that can help Kelley get around, get food, just spend time with her when she in the area. If you would like to be part of the San Jose network again please email.

I can’t tell you how good this has been for Kelley. She has been so ready for someone to believe and tell her that she can get better (and not just her friends, but a medical professional). Dr. Zhu has been the first professional to offer that opinion to her, as he did to Marjorie, and Kelley is ready to go. Will keep you posted, as things progress, I believe she is staying down in the area to see him tomorrow as well. Later then, Sue

June 5 Update

I know it’s been a long time between posts, but have been away from a computer for a couple of weeks. Included in that time was the Yampa River, Kelley Kalafatich Fundraising Trip, sponsored by OARS, which was an overwhelming success! The trip had it’s challenges, with the highest water seen since 1983 (the river peaked at around 25,000 cfs on the 3rd day) and unseasonably cold and wet weather. But frankly this just added to the overall experience in its own way. If you have never been, the Yampa is an absolutely stunning river canyon, second only to the Grand Canyon in my estimation for visual beauty, and different then the Grand in terms of its beautiful 100-year floodplain terraces where the river camps are located.

The trip included 22 women who paid to go on the trip, Julie Munger, Abigail Polsby, Don Ahlerd, and Marty Schlein, who worked the trip for free, and last but not least Natalie, Debs, and Steve, the Hatch/Oars guides working the trip. The energy on this trip was very special. Two thirds of the women on this trip are personal friends of mine who also know Kelley, the remaining third were friends of theirs. I know Kelley does not really grasp the influence she has on people, even people she has only met briefly or have only heard about her. Some of the women on this trip had never been on a river before, and what a place for their‘first”, Needless to say I think they are hooked. Anyway we held Kelley in our hearts throughout the trip, and I reflected on how many people Kelley has helped in her professional life to enjoy the unique experience of a trip down a beautiful remote river canyon. And how life changing that can be, especially with a group of people like we had on this trip, that bring such great energy to the experience. I was struck by how enthusiastic and down right fun this group of women was, and it was a joy to watch how powerful this experience was for many of them.

George will be donating all the profit from this trip (all of us paid the full commercial price) to Kelleys NTAF account, which should give her what she needs to purchase a suitable car to fit her needs. And everyone is already asking me if we can make it an annual event. I think we will continue to use this avenue to help generate financial support for Kelley, with willing outfitters in the river community.

Kelley has been experiencing ups and downs during the past few weeks, and most recently seems to have had some kind of relapse in terms of her pain management. It evidently have been very intense the last several days, and she is making appointments with various doctors to try and figure out what is going on and what can be done about it. Last week she was feeling good enough that we had hoped she could go with me to Santa Cruz this weekend for a fundraising event for her occurring there this Saturday, and a little sea kayaking. But this current situation has come up pretty fast. I hope the next blog I post can offer more information about what is happening, and a positive course of action. I can’t tell you how much strength Kelley shows in dealing with this pain issue, but it inevitably takes its toll and exhausts her mentally and physically. Please keep Kelley in your prayers, Sue

Update, May 15 - Progress, slow but steady....

Wanted to pass on a message sent on Kelleys yahoo support group from
oneof the support group members recently. I also got a similar report
today from Sue C. and Hilde who helped out with Kelleys PT on Tuesday.
Everyone who has helped with her PT is very impressed with her progress
and how hard she is working. The PT therapist told Sue C. that Kelley has
progressed from a 0 to a 1 , on a 5 point scale in terms of her
motor function in her lower body. Just 4 more steps to go. Please
include in your prayers for Kelley, gratitude for Kelleys support group
that are helping her on this journey.

" HI everyone,
Just wanted to let you know how Kelley did at PT last Friday. Kelley
is getting stronger and has better balance. Kel is making some real
good progress. Kelley is working out in the gym and in the pool. In
the pool Kelley is beginning to have some control of her legs. Some of
her muscle groups were really trying to fire (gluts, hams, quads
etc...). The movements are subtle but they are there. The nerve pain
is still taking her breath away at times (@#&$)(#*$)#*)$(*#), but is
does pass.

Please continue to send Kelley your love and healing thoughts. Kelley
is able to surf your energy when she is running low.
Take care. In healing,
Tori"

Back on the Water

Thought you might enjoy this photo taken this past weekend. Me, Kelley, and the boys got out on both Sunday and Monday this past weekend . This has been a great experience for both of us. Its still hard to see how tough Kelleys mornings and afternoons are, when she has to deal with her tough pain cycles. But this couple of hours in the middle of the day has been a definite high to counteract those lows. Kelley is still not really ready to manage the blog yet, so I will continue to be her voice for alittle while longer. Both her and Kurt are still pretty overwhelmed managing this all, and its not likely to change any time soon. But please do call or email Kelley and reach out to her personally. She definitely wants to interact with folks, the blog is just alittle to broad and impersonal for her. And definitely call for a visit if you are going to be in the area. Kelley is alone a fair bit some days, and evenings as well, when Kurt is at work. So company is often welcome. Just call ahead a time to schedule to make sure you can come by at a good time . Thanks, Sue

On the Water today!

You will be hearing from Kelley soon, but I wore her out today, so am doing the Blog tonight. We went out in my double sea kayak today in Lake Natoma (with our pups Wilbur and Roscoe of course). We were out for about an hour. After getting through some initial trepidation dealing with the logistics of entry, we were on our way. Kelley got stronger and stronger throughout the hour, and by the time we were heading back we were cruisin! It felt really good to Kelley to be on the water, and I am leaving the boat down so she can start going out regularly. More later, but it was a GREAT DAY! Sue

April 23 Update

Well just had a good conversation today with Kelley, we had a bit of catching up to do since I had been gone on vacation for a week. Not to much has changed, she still has intense nerve pain (particularly between 3 to about 5 pm), but is staying on top of PT before that kicks in. She is particularly enjoying her pool PT, and says her balance and ability to move her legs in the pool continue to improve by small degrees. She also thinks she may have found a good acupunturist, this is #3 right now. It is frustrating how many not so good acupuncturists and chiropractors there are out there, because when you find a good one you really "get" the magic they can accomplish when they really know their stuff. ....So we got some plans for this weekend, since I haven't seen her for a few weeks. We are going to try to paddle this weekend at lake Natoma, (in some sort of lake kayak), and I am going to show her how to post on this blog so she can start telling her own story....

Many of you know her friend Spencer who is fighting his own battle with cancer right now, and have been following his blog. Kelley has incredible admiration for his unique ability to tell his story through his own difficult challenge. I will continue to help Kelley with her blog,and she will tell her story differently then Spencer, but you can expect to hear from her directly more in the future.

I have also been reading Spencers blog regularly. As sad as it is that these two special people are facing such trials right now, being part of this experience has been incredibly powerful. Spencers wisdom and heart, Kelleys strength and perseverence, and for both, the courage and grace that keeps breaking through as they face there individual challenges has profoundly affected many of us. I know my life and perspective has been forever changed. So with the sadness and fear about what lies ahead, there is also hope and inspiration. The next blog will be from Kelley, so stay tuned.... Sue

April 5, Update

No big news to report since the last blog. Kelleys condition is about the same, and she is continuing to push herself more to get out and do things despite the nerve pain discomfort and the effects of the drugs. Last weekend we had a fairly lengthy outing at a local park, to check out the vernal pools and let the dogs cavort at the dog park. Its still a tough go though, and the drugs make her very tired sometimes.

We are continuing to schedule fundraising efforts to make sure money does not become an issue. So far things are stable relative to that. Her insurance is awsome, and her NTAF account balance currently adequate to pick up what insurance doesn't cover. However her physical therapy and accupunture insurance limits are likely to run out well before the calendar year is over, and they are critical to keep going.

So thinking ahead, there are a few things coming up. The Yampa trip donated by OARS over Memorial Day weekend is almost full. George (the owner) is going to donate all the profit from the trip to Kelley. A special bonus for that trip is Julie Munger and her partner Abby are going to come, and are working on getting permission from the Park Service to bring riverboards for the customers to use with them as guides/instructors on the trip.

We also are going to show the 3 women, 3 hundred miles DVD at the Louden Nelson Auditorium in Santa Cruz, on Saturday June 7. Will send a reminder as that gets closer. I also have gotten 100 copies of this DVD to sell. See details for that to the left side of the page if you want to purchase, 90% of the proceeds go to kelley from the DVD sales. Thats all for now, Sue

March 21 Update

Sorry for the long time between updates, but here is the latest. Kelley and Kurt just went through a stressful time because Kurt developed an injury in his shoulder from a hard paddling workout that somehow turned into a serious staff infection. Dealing with that was pretty intense for awhile. Thank goodness for Leona (Kelleys Mom) who took care of both of them until Kurt was through the worst of it, and other friends who brought by food and helped drive them to doctors appts. He is on the mend now, although his shoulder is definitely going to need some rehab. So they will both be doing physical therapy for awhile. Kelley is still dealing with nerve pain and her drugs and because of that it is often hard for her to focus and maintain her energy. But in the past week or so she has really forced herself to push through and stay steady on her physical therapy. She has also gotten a couple of acupuncture treatments. She continues to feel more and more sensation in her lower extremities, and can "feel" touch on her skin in areas that she couldn't feel before. In addition to still being able to move some toes on her left foot, she also was just able to move a toe on the right foot in the last couple of days. So the flow continues... still a trickle but flow none the less... I also had the opportunity to show the "3 women, 3 hundred miles" DVD at the F.O.R. conference last weekend. Had a very enthusiastic audience of about 60 to 70 people, ,sold 11 copies of the DVD, and got a couple of donations, which will go to Kelleys NTAF account. I don't have to tell you how emotional it is to watch this DVD, and how much I look forward to the day when we can once again share adventure in the rivers and oceans again with our friend. Until next time, keep Kelley, Kurt, and Leona in your thoughts and prayers. Sue

February 26 Update

Had a good conversation with Kelley this past weekend, and she shared some encouraging news. She was able to move a couple of her toes, while concentrating on it. I know it isn't much but we are hopeful it is just the start of a trickle of sand that will continue to gain momentum. This week she is also scheduled to start her first water therapy session, first at the physical therapy clinic, and then later in the week, with a couple of friends at 24 hour fitness. The pain is still her regular unwanted companion, but she does feel it is reducing in intensity. At any rate she is encouraged by these positive events and looking forward to moving to another level in her physical therapy. Sue

February 19th Update

Not much to report exept the following excerpt from an email I got from Kelley today that I think best describes where she is at right now..

"My pain seems to be getting a little better or at least I can predict when it will come and the bouts are getting less strong and not as long, or I'm getting used them"

She has also had some important doctors visits recently. One with a new primary care physician at Davis who she thinks will be more aggressive about keeping track of all of her medical history and progress, on all different levels, and hopefully managing her future care better. And she also saw an infectious disease specialist who will be agressively pursuing some answers regarding how much schisto may have been involved in all of this. This is more for Kelleys peace of mind, since at this point it will not change the damage that has been done, or affect her recovery from the paralysis and nerve pain. On that front nothing significant to report other then it does appear the pain issues are getting better, and that can only help with the rest of her recovery. Sue

Update, January 30

Kelley was released from UC Davis on Monday evening. She is back home and taking visitors. Do call and arrange in advance if you can, just to make sure your timing is good.

Thanks for Meditation

Kelley sends her thanks and appreciation for this afternoon's
meditation. The timing worked out well in the room. There were no
interruptions and it was fairly quiet with the door closed. Kelley
was able to transition into a very peaceful state as she received. It
was very nice to see her so calm.

Kurt

Collective Healing Mediation, 12:00 pm PST Sunday

Friends,

Below is part of an e-mail message sent by Rowena, a friend of
Kelley's mother, Leona. Rowena suggests a short 'collective thought
session' with positive thought or prayer directed towards Kelley's
healing. I especially like what Rowena writes: "we can meditate on her
regaining her health by focusing on the joy of that healing outcome,
rather than focusing on the trauma that she is currently
experiencing". I think she makes a very important clarification in
how we should direct our energetic thoughts.

Kelley wishes to have the first session tomorrow, Sunday @ 12:00 noon,
PST, for about 5 minutes. Remember to adjust for your individual time
zones. At this time, Kelley herself will be in meditation, receiving
your loving, healing thoughts and prayer.

Please spread the word,

Loving Regards,
Kurt

__________
Rowena writes:
I believe our thoughts are powerful things. Even science has proven this
as fact. Also, the more emotion that is felt with the thought, the more
powerful that thought is. I believe we can create amazing changes in our
lives with the power of our thoughts. I believe that two people meditating
on the same thoughts increases the power of those thoughts not just
double, but tenfold, or even one hundred fold. Imagine how powerful it
would be if a good sized group of people meditated on the same thoughts,
and at the same time!

I believe the things that happen in our lives are a result of our
collective thoughts. There are so many people living in the world today
with so many varied thoughts, which is why I think there is so much
diversity in the events we experience. There is love, hate, trauma,
exhilaration, pain, pleasure, etc. We can each create great changes in our
own lives by the thoughts and emotions we have, but I believe we are also
somewhat at the mercy of the thoughts of others. I believe our thoughts
are all interconnected, but those thoughts that are closer to us can have
more impact.

All that being said, I believe that when we think of Kelley and what she
is going through, it is important to dwell on every positive thing we can.
When obstacles arise, it is good that they are taken care of quickly, and
not dwelled upon.

When it comes to our thoughts, there are always two sides to every
subject.... the subject itself, and the 'lack of' that subject. In
Kelley's situation, with health being the subject, we can meditate on her
regaining her health by focusing on the joy of that healing outcome,
rather than focusing on the trauma that she is currently experiencing.

>From the little exposure I have had to Kelley's friends via reading the
blog, I've gotten the impression that this is a positive, enlightened
group of people, who will understand that I don't mean to invalidate
Kelley's suffering in any way. I know it is very difficult for those who
are extremely close to her, and that when she suffers, her family also
suffers.

So in my own meditation, I will take some extra time to include healthy
positive thoughts for all of you as well. I already have a couple of my
own close contacts waiting for me to give them a time for the group
prayer/meditation. As I have not kept my friends up to date much, this
will be a routine meditation, done out of love for a fellow human being.
__________

Thank you, Rowena.

Update, January 25th

Kelley is still in hospital, but white cell count is down (which is good). She may be moving into an intermediate physical therapy ward for a little while before coming home. Kelleys pain issues have been so intense she is now getting daily visits from the pain mgt team, and they are aggressively working to get things under control. Kelley is at the point where she would like to receive visitors. It helps relieve the boredom and distract her from the discomfort she feels. So please do try to stop by, she would really enjoy having contact with her friends. You should call her ahead of time to check in and let her know when you plan to come. She is in the Trauma nursing unit currently, room 1113 I think (but you can check in and verify at the hospital. Probably be good to visit between hours of 9 and 6. Thanks, Sue

Update, January 21

Visited with Kelley a couple of days over the weekend. Things are still pretty rough for her. The nerve and spasticity pain are as bad as its ever been and maybe even a little worse (gets up to an 8 or 9 sometimes). Possibly in response to the additional trauma her body has recieved from her recent surgery, but no explanation is offered by the Docs. She is still in the hospital primarily because of a general infection in her lower abdomen in response to the surgery, and is currently on antibiotics. This is not an entirely unexpected response, and not a great cause of concern to them at this point, but needs to be resolved before she can leave. They also want to try and get her pain management under better control before she is released. I got a little lost when Kelley explained the experimentation they are doing with the meds, but suffice it to say they are trying to get a handle on it. So no scheduled release at this point. She has her good moments when the meds are working, but some really awful times in between. Obviously this is still very draining and exhausting for her. She is recieving regular visits from Kurt, her family, and her core support group, and it is a comfort to her (and for us frankly as well). As hard as it is to witness her suffering, it is also reassuring to see her strength and stamina of spirit that will get her to the other side of this. The blog response has been great, for those of you who have not blogged yet, please feel free to keep adding. It will still be awhile before she can handle other forms of communication to any degree I think, and the blog is something she can visit more then once ....... so keep those healing energy currents and waves flowing to her and her courageous family (Kurt, Kim and Leona)

Sue

Update

Kelley is still at UC Davis. She is continuing to improve, as far as her recovery from her emergency colon repair surgery, and the complications with skin infection, and strength and energy level. She will still need to stay at Davis for awhile until they are sure her risk of post surgery infection can be be managed at home . The other good piece of news is that her most recent MRI shows that the lesions in her spine (cervical/thoracic) have reduced in size. Still to be seen what continued improvement will be gained in motor function. There is some troubling news, in that a couple of lesions have shown up on her most recent brain scan. More testing and monitoring will need to be done to determine the significance of that.

There is still alot that is not "known' about Kelley's condition, and causes of things that are happening to her, and prognosis for long term recovery. As more certainty is gained about these things, they will be shared on this Blog. She still is unable to recieve visitors, and does not have energy to deal with phone calls or emails. It is likely to be that way for awhile, so again, please post a comment to the previous post if you want to send your thoughts and best wishes at this time. It does help her to recieve your energy in this way, that does not take energy from her.

Sue

Update, January 7

Kelley is still at UC Davis. She is still very weak, and extremely susceptible to infection and in fact has developed a worsening case of shingles (skin infection). She therefore is still in quarantine, so will not be able to recieve any visitors. She probably is still too weak to deal with phone calls as well, and no doubt has a huge back log of messages on her cell phone.
Her overall condition as far as fatigue and strength after her surgery is improving but she has a ways to go. I'm sorry I have no details to provide as to why these complications are happening. I think it is safe to say that the big picture is that the physical dysfunction that the tranverse myletis has caused has left Kelley very vulnerable to alot of potential complications.

I would like to encourage folks to post a comment to this blog if you want to pass on your thoughts and best wishes to her at this time. I think this would be nice way for kelley to be able to recieve your communications until she is feeling better, and better then clogging her phone and email with messages she just can't cope with right now. Her family could also help with sharing your sentiments with her from this blog as well. It is so frustrating at times like these to feel like there is so little we can do to really help, but I think our prayers and sentiments can actually help in a significant way. So please figure out how to post comments to the blog, and send your positive energy and thoughts her way. Sue

New Medical Situation

Kurt had to take Kelley to the UC Davis emergency room on December 31st.
She had 'free air' in her abdomen, meaning that there was a rupture
somewhere in her bowel. Kelley went in to exploratory surgery that
evening. She was found to have a perforation in her colon. After
maintaining through a very critical period, she has now stabilized in
her vital signs. She is currently resting and recovering from this
ordeal at Davis, it is currently unknown how long she will need to be there.

Kurt and Kelley's family ask that there be no visiting during this time.
as Kelley's exposure to outside germs needs to be absolutely minimized.
She has no energy to field phone call and will need to rest in
order to recover. Please stay tuned to this Blog to find out when she is
able to recieve phone calls and visits again, and to check on her progress.

Keep her and her healing in your thoughts, Sue