Kinsley ThomasWong ~~~ April 13, 1967 - March 13, 2016
Monday March 21st and Tuesday March 22nd our families will be gathering in Houston TX for the buddhist services. If you live in the area and want to attend, feel free to reach out to me at firstname.lastname@example.org and I can pass along information.
Over KiteXPO weekend we will do a big celebration of life and paddle out on the beach over the weekend of April 16th and 17th. More details will follow here when we know.
2016 March 13:
As some of you have heard by now, the love of my life transitioned on Sunday, March 13. I am having a hard time putting words in an email to send out instead of calling, but with the amazing network of friends Kinsley connected together over the years, it is an impossible task!
On Sunday March 6, Kinsley woke up as usual. He drank some water with no issues but a bit later his body had a spasm, which is common when he hasn't been moving, and the water came back up. During the spasm his whole body locked down and his esophagus couldn’t release in time for the water to be able to come back out, even with my help. He aspirated and then his lungs quickly started shutting his body down. Kinsley entered the ER in critical condition and over the course of a week, stabilized. His lungs, although getting better, were affected by this event and he struggled to take the breaths needed to keep his oxygen level up and carbon dioxide levels down. The hospital wanted to put him back on a vent and he refused; he did not want a machine keeping him alive again. I cuddled up next to him, and we played the Beatles song "All You Need Is Love," through ear buds in each of our ears. We chatted and sang the song on repeat, with him relaxing into sleep with the words love, love, love, all you need is love, carrying him. That huge spirit that lit up this world and was meant to fly is now free to soar.
Kinsley had the most amazing gifts. He was a master connector who touched the lives of the friends and family that hold him close, along with the individuals he met in his travels. In whatever sport, community or group he has been part of, Kinsley was that ray of sunshine that showed the world how to just be happy and present and live in the moment. He truly embodied all of these things and just loved every second we are blessed with life on this earth. Kinsley’s love of the outdoors — the beach, the warm sun and wind, and the feel of sand blowing through the air — are infectious and forever created stoke in all around him, with a smile we will all never forget! This world will not be the same without Kinsley’s spirit, energy and stoke.
He has forever changed us all. We have all gained a new guardian angel though.This angel of stoke and passion and living in the moment will forever surround us to keep us focused on what matters most, connecting us all together as one family. All of your posts on Facebook along with your emails and phone calls mean the world to us and will help build a memory of Taizen’s daddy that we can always share with him. So please continue to share your thoughts and memories with us.....
2016 February 15:
For the past five years, with daily work out routing of at least two
hours or more on functional electrical stimulation bike and training together with physical trainers, Kinsley has regained mobility on his left arm to drive the power wheelchair.
Family and friends: Kinsley is on a new journey to receive stem cell
surgery from Dr. Scott Spann at Westlake Orthopaedics Spine & Sports.
The surgery will be in Cyprus and costs approximately $80,000:
surgery, hospital cost, traveling. In summary of the surgery: Dr. Spann
removes the scar tissues that may have formed. Then he extracts the
stem cells from Kinsley's hipbone marrow and reinjects into the spinal
A local friend of Kinsley talked to two of the four Dr.Spann's
patients right after the surgery.
My injury was last year October 26th. I'm a T10 and had no sensations
or movement from belly button down. The first surgeon that did my
initial surgery left my spinal cord pinched by 40% and Dr. Spann found
it after having a mylogram done. The surgery went really great with no
complications! The nurses were good about giving me what I needed when
I asked for things and were super nice! After the surgery I've had
tingling sensations that come and go and a little bit of deep touch
feeling that come and go sort of around my knees. Long term I would
hope to walk again from it. Dr Spann said it will be a slow process
kinda like watching grass grow so just gotta keep on keepin on. But I
feel real good about it all and how everything went over there
I had multiple conversations with the other person. She said:
I’m doing really good…not having any more pain. My legs are
definitely more fired up. They have felt a little different the last
couple weeks. I’m trying to focus a lot every day on moving my toes
and legs and when I do focus in my toes they really fire and tingle
lots more. I have lots of faith that there will be good results.
Lots of healing in the spine to go.
Did you ask him if he was? The last two morning I have had different
feelings in my stomach feelings to pee lol woke me up in the middle of
the night…was kinda annoyed lol but glad. I know that Hunter met a
guy who was a quadriplegic and he’s now standing and close to walking.
I have heard of another one out of Oregon same story.
Yes ... went also. There was 4 of us total that went. When ...
patients in his office. He was a complete quadriplegic. I was told
that he is standing with full balance now. His testimony was what
made ... want to try the surgery.
Information about Dr. Spann is at:
Kinsley has battled spinal cord injury rehabs during the last 5 years and exhausted his resources. This Wheelchair will help Kinsley to stand up every day, one step closer to his strive to walk again. Insurance only pay $15,000 out of $45,000 for this wheelchair:
Currently: We Are Working to fundraising the $25,000 balance to purchase this wheelchair!
Kinsley's latest contribution:
a website to help other quadriplegics:
Kinsley's latest designs:
October 2, 2015:
April 13, 2015
January 29, 2015: Tech4Quad.com
Thank You so Much to all my friends, for your love and support!
December 16, 2014:
July 15, 2014
November 8, 2014:
We Enjoyed meeting Michael Franti and his music, including Ethan Tucker, opening.
A Big Thank You to Michael Franti, www.doitforthelove.org, and my friend Jeff Parker for a Do It For the Love Wish Grant.
Do It For the Love was founded by Michael Franti and his partner, Sara, an ER nurse, to bring the healing power of music to those who need it most. You can find more information on our website at: www.doitforthelove.org
Traveling all the way from Poland to demo at KiteXpo, Gosia Rosiak-Brawanska gave away the grand prize of Sunday’s raffle, a 10m Nobile Kiteboarding Fifty/50 kite to Southern California kiter Dave Boston. Local central coast rider Alli Pareti was beyond stoked when she won the Best Armada board presented by Rich Sabo from the Gorge. Attendees then took to the water to demo gear and enjoyed 9-12m conditions until sunset.
Over $14,000 in gear, accessories and trips was donated by 17 participating companies including Airush, AXIS Kiteboarding, Ben Wilson Surf, Best, Cabrinha, Dakine, F.One, HQ Kites USA, Litewave Designs, Liquid Force, Loyd Surfboards, Mystic, Naish, Nobile, North, RRD, SAKOS Waterwear Apparel and Slingshot. Grand prizes included a Ben Wilson Surf Noise Pro (winner got to choose size), 10m Nobile Fifty/50 kite complete, 12m Epic Screamer, 132 Litewave Designs Carbon Kick, 134 Best Armada Twin Tip, 138 Liquid Force Focus, a custom 5’8” RIPPA Kite Surfboard courtesy of Loyd Surfboards, a Cabrinha Wakeskate, harnesses from North, Naish and Manera and custom made wine barrel beach chairs courtesy of overthewavesdesigns.com.
Special thanks to Helen Trotman and Dimitri Maramenides of Epic Kites who couldn’t attend this year but donated a Screamer to support the fundraising efforts. Canyon Beachwear, Over the Waves Designs (custom wine barrel beach chairs), Kurtis USA, Murray’s, Frank Vedres (winter and summer luxury Mammoth condo holidays), MonaVie Energy Drinks, Elemental Herbs, Pena Surf Brazil, and GliderUSA.com also generously donated toward this year’s raffle.
Between the winemaker dinner sponsored by local kiter Dan Tudor of www.tudorwines.com on Friday night, the Sat evening BBQ hosted by Maui Mike and the Lujan family, and the daily raffles, the event raised $11,187.78 for the ThomasWong family to help event founder, Kinsley ThomasWong, in his ongoing recovery efforts.
Thank you to all the vendors for their support, the volunteers who helped out with the event and the riders who came from all over to partake in the festivities and demos. The 2015 Pismo KiteXpo will be April 10-12 with more clinics planned including surf and freestyle. For more information on Kinsley’s ongoing recovery efforts, see www.friendsofkinsley.com
The final day of the Pismo Beach KiteXpo was blessed with blue skies and wind, a great finale to three days of clinics, raffles, parties and demos for the 12th annual event.
The day started off with a final “How to Help an Injured Kiter” presentation by Kirk Talon at 10:30a, followed by a “Shove It” clinic sponsored by Litewave Dave. Attendees then converged on registration for the final raffle at noon, right before the wind line hit the beach.Traveling all the way from Poland to demo at KiteXpo, Gosia Rosiak-Brawanska gave away the grand prize of Sunday’s raffle, a 10m Nobile Kiteboarding Fifty/50 kite to Southern California kiter Dave Boston. Local central coast rider Alli Pateti was beyond stoked when she won the Best Armada board presented by Rich Sabo from the Gorge. Attendees then took to the water to demo gear and enjoyed 9-12m conditions until sunset.Over $14,000 in gear, accessories and trips was donated by 17 participating companies including Airush, AXIS Kiteboarding, Ben Wilson Surf, Best, Cabrinha, Dakine, F.One, HQ Kites USA, Litewave Designs, Liquid Force, Loyd Surfboards, Mystic, Naish, Nobile, North, RRD and Slingshot. Grand prizes included a Ben Wilson Surf Noise Pro (winner got to choose size), 10m Nobile Fifty/50 kite complete, 12m Epic Screamer, 132 Litewave Designs Carbon Kick, 134 Best Armada Twin Tip, 138 Liquid Force Focus, and a custom 5’8” RIPPA Kite Surfboard courtesy of Loyd Surfboards. Special thanks to Helen Trotman and Dimitri Maramenides of Epic Kites who couldn’t attend this year but donated a Screamer to support the fundraising efforts. Canyon Beachwear, Over the Waves Designs (custom wine barrel beach chairs), Kurtis USA, Murray’s, Frank Vedres (winter and summer luxury Mammoth condo holidays), MonaVie Energy Drinks, Elemental Herbs, and GliderUSA.com also generously donated toward this year’s raffle. Between the winemaker dinner on Friday night, the Sat evening BBQ hosted by Maui Mike and the Lujan family, and the daily raffles, the event raised $10,187.78 for the ThomasWong family to help event founder, Kinsley ThomasWong, in his ongoing recovery efforts.Thank you to all the vendors for their support, the volunteers who helped out with the event and the riders who came from all over to partake in the festivities and demos.
Cris Mitchell Photography is proud to announce the arrival of our
2014 California’s Central Coast Calendar – A Benefit for Kinsley ThomasWong
Purchase Your Calendar on line Today: www.CrisMitchellCalendar.com
or pick one up locally at these locations from our supported friends business locations:
San Luis Obispo:
A French Touch -- Parisian Skin and Bodycare Salon
1023 Nipomo Street, Suite 100
San Luis Obispo CA 93401
Phone: (805) 785.0340
Riding Warehouse - Long Riders Gear
181 Suburban Rd
San Luis Obispo, CA 93401
Phone: 888.420.GEAR (4327)
102 Esparto Ave
Pismo Beach, CA 93449
Phone: (805) 773-3757
Ardy’s Pilates Studio
580 Cypress Street, Suite N2
Pismo Beach, CA 93449
Phone: (805) 773 3863
SPECIALIZED FITNESS AND TRAINING STUDIO
2 James Way, Suite 214
Pismo Beach, CA 93449
Phone: (805) 574-1777
The Sky's The Limit Kite Shop
761 Dolliver St
Pismo Beach, CA 93449
Phone: (805) 773-8697
TorChell Mind & Body
2 James Way, Suite 108
Pismo Beach, CA 93449
Phone: (805) 773-8100
Clayton Michael MD
921 N Oak Park Blvd
Pismo Beach, CA 93449
Phone: (805) 473-7818
This is a beautiful full color glossy 12×12″ inch calendar with images from Santa Maria to the south all the way up to Big Sur in the north and everything in between. This calendar is filled with images that make the Central Coast a unique place to visit and live.
A Calendar With A Cause!
Quotes from Satisfied Customers“Born and raised in California, now an Oregonian, flipping through the pages of my new calendar was reminiscent of times spent
on the Central Coast, growing up, and as an adult.
Cris has produced a calendar of the finest quality, showcasing his natural talent for capturing the beauty of the outdoors.”
Christine Ancell – Springfield, Oregon
“Cris Mitchell has continued to deliver a lifetime of eye candy landscapes and portaits throughout his career as a professional photographer, and this collection of natures grand design represents a lifetime of dedication to his art.”
Harry Gale – Sebastopol, Ca
“I LOVE California’s Central Coast 2014 Calendar!
Each month displays a stunning photo and there is actually room to write down important things in each day’s space!
Love the look and feel of it. Worth every penny and makes me feel good knowing it’s to benefit a special family. Can hardly wait till 2014!!!!!”
Angela Montegari-Ponte – Lagrangeville, NY
Take a Virutal Walk-Thru below to see what your calendar will look like.
Dear Family and Friends:
As of today, it has been three years into this journey of recovery. From the bottom of my heart and my family, we appreciate all the help and support and love we have received from you! Thank you.
With the help with assistive technology software such that Dragon NaturallySpeaking and Quadjoy mouse using my mouth, I have been doing many fun projects to help my friends as well at keeping in touch with all friends by Facebook, e-mail, and telephone.
My daily exercise starts out around 8:30 AM to noon with FES bike: 10 miles on the legs and 2 miles on the arms. Then lunch, work, and back to physical therapy for another hour or two.
I can raise my left arm to my shoulder level now. Everything else is still asleep. Right SCM and trapezius still giving me pain every day. I am feeling stronger every day: I have not taken any pain killer or medicine for at least 2 1/2 years :-)
Taizen is now three years old. He is a happy kid with lots of energy and is currently going to preschool every day. I am so grateful to have such an incredible soulmate, Jamie. She is doing well and is feeling much better.
Working toward the future, I have started this foundation: http://twfoundation.wordpress.com/our-mission/
I hope that your summer has been a fantastic one.
I will keep you all up dated with my progress here.
Kinsley ThomasWong :-)
A Big Thank You to Teachers and Students of Mr. Rickett’s Physical Education Classes and Mr. Goldzman’s Physical Education Classes of Paulding middle school for raising and donating $1590 Through Push Ups for a Cause to construction of wheelchair ramp.
Paulding Middle school's Push Ups for a Cause provides an opportunity for students to improve their own fitness, and also give our students a chance to give to those in need from our own community:Max pushups for boys was 80 and for the girls was 50. The participants were the 8th grade class from Paulding Middle School 2013
Left to right:
Sean Ricketts, Jayci K., Heather V., Grace N., Kian B., Mike S., Sam S., Garrison O., Phoenix F., Larry Goldzman
Thursday April 11, 2013: Winemaker’s Dinner/Kinsley’s Birthday Giuseppe’s Italian Restaurant. Seating limited to 60 people. Email email@example.com to get on invite list. Details in next few weeks.
June 1, 2012
A big Thank you to Teachers and Students of Mr. Rickett’s Physical Education Classes and Mr. Goldzman’s Physical Education Classes of Paulding middle school for raising and donating $4308 Through Push Ups for a Cause to The EasyStand Glider – standing frame.
Paulding middle school's Push Ups for a Cause provides an opportunity for students to improve their own fitness, and also give our students a chance to give to those in need from our own community.
top left to right- Larry Goldzman, Tyler Melsheimer, Jalyn Schaefer, Calley Pruett, Olivia Kotlarek, Jamie ThomasWong, Kinsley ThomasWong, Taizen ThomasWong
Bottom row left to right- Mckenzie Richerson, Amelia Vance
May 30, 2012: Kinsley 's daily workout: 2 miles on the arms, 10 miles on the legs, and One or two hours with physical trainer/therapist.
Xtreme Big Air Winemaker Dinner & Birthday Bash, Thursday April 12, 2012
Come help us celebrate the 10 year anniversary of the Pismo Beach KiteXpo and Kinsley's Birthday! Winemaker Dan Tudor of Radog Wines and Giuseppe's have created an awesome five course dinner for all to enjoy. Dinner limited to first 60 respondees, $60 per person, all inclusive.
March 07, 2012
Kinsley has been riding 10 miles or more on the RT300 FES bike everyday.
check out the YouTube clip: http://youtu.be/LBAbLu7G6p8
He specializes in paralysis, mainly stoke patients. We have not seen a lot of work done by him on spinal cord patients but have the opportunity to have up to 7 sessions with him during our trip so we are excited to see how it will go. It is certainly a lot easier to see how his process works with Kinsley here in the states than to fly to China to see it.
Here is our schedule of treatments (held at 5 Branches 3031 Tisch Way #5 San Jose):
- Sat Dec 17 6pm (tentative still)
- Sun Dec 18 6pm (tentative still)
- Mon Dec 19 (time unknown but most likely afternoon)
- Tues Dec 20 10:30am and 5pm
- Wed Dec 21 10:30am and 5pm
December 1, 2011: Santa Barbara – cottage Hospital
Today Kinsley had his second Surgery to correct his neck on C-5 to C6. Everything went well.
November 10, 2011 Kinsley on FES bike
A big huge hello from me: Kinsley.
As of today, I am able to write this blog using a dictation software, Dragon natural speaking and a special mouth Control mouse device. It has been a little bit more than a year since my injury. Currently I am able to control my wheelchair with my left arm. Tomorrow is Jamie birthday: my wife is the most incredible and amazing woman. Together we have overcame so many obstacles and we truly appreciate all the love and support from our family and friends. Internally and mentally, I feel extremely strong. During the last year, I had kicked off so many medical devices, such as Trae, pain medicine, etc.
Next Sunday, October 30 a FES bike will be installed. I am really looking forward to ride it everyday. Cycling with Functional Electrical Stimulation (FES). FES works by having a computer send electrical messages to a person’s muscle, causing it to contract in a way that can be used for purposeful movement, such as grasping an object. Riding an FES bike simulates the physical activity that a person normally experiences during an average day. Cycling for one hour is equivalent to walking 6,000 steps.
Also in the near future, like in a few months, is the possibility of me getting another neck surgery to correct the pain that I am enduring daily.
I am looking forward to motivate others with spinal cord injuries, and to kite, to paddle, to ride waves with you very soon!
Kinsley On total gym with Larry:
Kinsley on Nustep with Jens:
Brief Update on Kinsley 9.10.11
Kinsley has been evaluating different stem cell (& potential combined bone marrow) clinics. He has shown me a case of great progress recently from a patient that Kinsley has had Q&A with in the past on progress.
Here is the case example I was given: http://www.stemcellschina.com/index.php/en/-spinal-cord-injury---mr.-iordache
They also have a few big purchases on the horizon and Kinsley is doing a ton of research in
to what is next for him. Here are a few recent pics of Taizen and the family - thought you might like to see them.
I look for Kinsley & Family to provide a more detailed update in the near future. Kipley Lytel
Kinsley Push Ups at NextStep 6.06.11
"I have visited Kinsley since he has been back home on 6/08/11. Kinsley is back at it, 'charging' given he has been exercising with trained specialists and machines at NextStep Fitness for over six hours a day. He pushed his limits at NextStep and accomplished more than he expected. Now that he is back home, he is driving himself with many more therapy and exercise techniques. This new approach has helped fire new connections in his body with greater sensation." Kip Lytel
Kinsley Update 5.24.11
Go Kinsley! We know you will be back on the water and in the air before we know it! http://www.youtube.com/watch?v=gHp-AIrMIQg&feature=related
NextStep Fitness is a non-profit organization that brings the latest in fitness innovation, health and wellness to individuals living with paralysis and other physical disabilities. Locomotor Training is an innovative intervention that helps individuals with gait impairments. NextStep Fitness is the first facility on the West Coast to offer Locomotor Training in a community fitness setting. The technique is an activity-based therapy that works to retrain the spinal cord to "remember" the pattern of walking again. The fundraising paid for this treatment - thank you all!
Kinsley Update 03.15.11
This video speaks for itself but….. way to go Kinsley -- you’re kicking butt!!!!
Kinsley Update 03.02.11
Today is a day to remember; Kinsley has hit another major milestone...
His trach was removed! He is loving how it feels to eat, breathe and workout
without it. Go Kinsley!
From the Family:
Taizen just turned 6 months old and is having fun scooting backwards and getting ready to crawl. He is a happy kid and growing quick. Here is a recent video: http://www.youtube.com/watch?v=tun0lqv8HPc
Per our last update, Kinsley recently started seeing a chiropractor, Dr. Brent Trockman, who specializes in NUCCA which is an adjustment of the atlas and axis (upper cervical) in the neck. With over 40,000 xrays under his belt, Kinsley won his world record award smashing the prior record of almost 9 degrees off – Kinsley is almost 11 degrees off. This has most likely been the cause of a lot of his pain since the accident as well as why his neck/shoulders are so tight and his head tilts to the left. Working with Brent he has been producing amazing results in a relatively short amount of time. Kinsley’s neck and shoulders are straightening and loosening up and he is gaining more strength in his arms. He can now lift his elbow off his chair and lift it higher when shaking your hand (check out the video: http://www.youtube.com/watch?v=6evNq38IE-0&feature=player_embedded). He looks great and feels even better. We look forward to seeing how much continued progress he makes as a result of bringing his neck back to neutral. With Larry (personal trainer) Kinsley is now standing for over 30 minutes at a time now working out while standing on his trunk control. He is able to stand straighter and help make the adjustments needed to stand up straight with less help each time. The last piece of great news is very soon we will be removing Kinsley's trach. He no longer needs it and we are leaving flu season behind. That will be an exciting day and milestone. Kinsley has shown his strength and determination with his trach. After being told he would need it eventually only at night for the rest of his life he was completely weaned from the vent before leaving rehab and is now ready for the trach to be out! No surprise to those of us who know him, but amazing to show that limits never need to be taken as anything but a challenge. Thank You to all our friends and family for your continued support and love. We couldn't be doing this without you!
Take Care and Have a wonderful spring - The family is doing great and we are hoping for a very very windy kiting season for everyoneJ
Kinsley, Jamie and Taizen
Taizen Video: http://www.youtube.com/watch?v=tun0lqv8HPc
Kinsley Video: http://www.youtube.com/watch?v=6evNq38IE-0&feature=player_embedded
Kinsley Update 2.24.11
The new chiropractor has been wonderful for Kinsley. KInsley’s axis (very top bone that is next to the skull) was really off (world record for this doctor). It corrected really well on Monday and his neck and shoulders are really loosening up. Kinsley and Jamie have another appointment this week to keep the progress going. Another great addition to the Kinsley recovery team!
Kinsley, Jamie & Taizen Update 02.17.11
Kinsley is now standing in the standing machine for 35 minutes and kicking butt. He is getting stronger and more muscles are kicking in. They are looking into alternative therapies to help him even further along in his recover process. Kinsley and Jamie are also adding a new member to their team, a specialized chiropractor who will use a detailed and special X-ray to help align the top of Kinsley’s neck better. This will hopefully help him sit and stand straighter and release some of the tension in his neck and shoulders.
Construction: Over the holidays, the bottom floor and garage of Kinsley and Jamie’s house in Shell Beach flooded. Kinsley and Jamie need some help putting it back together – they’ve done most of the dirty work, just the finished work needs to be completed. This should be a weekend of work with a few people. Anybody interested in helping, please email me so I can coordinate:
Two 8x8 rooms downstairs with connecting pocket door and hall entry: new carpet pad needs to be laid and existing carpet re-laid; baseboards reinstalled and painted, small patch drywall, little bit of paint in hall
· Some minor tile work needed in hallway
· Paint one wall garage
Baby Taizen Update
Taizen is getting bigger and stronger too, and is a drooling machineJ He is good at sitting up and supporting himself and is starting to figure out how to get his knees under his bottom and push up at the same time (lucky for the family he alternates most of the time still). Here’s the latest video of Taizen in his jumper http://www.youtube.com/user/XtremeBigAir?feature=chclk#p/a/u/0/GHu49dv_vqQ
Babysitting/light therapy/general support:
If you can spare a set day or two a week, every two weeks, or once a month to help Jamie out in the afternoons, let me know. This could entail babysitting Taizen, accompanying family on appointments to help transport Kinsley/watch Taizen; doing exercises with Kinsley, etc. Most help is needed in the afternoons between 1p and 5p. Email me and I’ll put together a list to give to Jamie at one time. Thanks in advance for any help/support you can provide!
Kinsley (& baby Taizen) Update 01.24.11
For Kinsley: He is doing amazing and getting stronger every day. On his left side all the muscles that help to make the arm do what it does are getting stronger. He can now lift his hand to be able to shake hands which is fun and a huge. He also can now start to lift his elbow and pull his arm up with gravity which is great! His right arm is getting stronger and more connections are starting to happen. He can move his arm using his shoulder and hopefully more will kick in soon. We were lucky to have a stand up frame donated to us so Kinsley has had his first session standing up straight since his accident. He did really really well and was able to stand up for a few minutes before his neck started to get a little tired. He will be working on his endurance with this more and more until his workouts with his physical therapist will be done standing. It was really special and a great moment for Kinsley to be standing up again :-) The standing frame will help his body get used to feeling weight on his joints and muscles again and help his body get stronger and continue to be ready for supporting him when he is able to walk run and play again.
Here is a video of Kinsley shaking hands with his personal trainer Larry: http://www.youtube.com/watch?v=AyNLHVdWKsA
For Taizen: He is almost 5 months now and is growing quick. Last we checked (a few weeks back) he was 16 lbs and 24 inches long. He is developing his personality and is a ton of fun. He still loves to stand and when you help support him loves to move around the outside of toys a little. He is jumping higher and stronger with his jumper and today for the first time rolled over. Going to the left he can roll from his back to his belly and then in the same direction get back to his back. We started swimming lessons which are cute. He is really comfortable in the water and has a blast, no surprise there.
Here is a video of Taizen's first rollover: http://www.youtube.com/watch?v=e5vpa2Nwl0Y
Attached are a few of our favorite recent family pics.
Have a great day,
Lots of love from us,
Jamie, Kinsley and Taizen
Kinsley Update 12.22.10 - Positive News!
Kinsley Videos: http://www.youtube.com/watch?v=GKMZvGVh_OU http://vimeo.com/18067558
Starting around Thanksgiving week, Kinsley started to gain use of his left tricep, bicep, shoulder, pec’s and lats. They are now strong enough to lift his wrist for the first time! In a gravity free environment when working with his physical therapist/personal trainer, he has almost total control movement of his left arm and can move it to the left and right, up and down, and in and out. Kinsley’s left side seems to be coming back quicker, followed by his right side. On his right side, his right pec is starting to contract as well as his lat. They have assembled an amazing medical team who work on Kinsley every day except Sunday so he is quite busy Monday through Saturday with his various appointments.
Taizen is growing quick and is too much fun :) He is now a whopping 4 months old! He just started eating his first solid food (rice cereal), is super strong, loves to stand, and both Kinsley and Jamie are pretty convinced he’s going to walk before he can crawlJ He has a ton of personality and loves to” chat” with his dad. When anyone is working on Kinsley while he’s in the room, Taizen is already protective and watches them like a hawk.
Taizen Video: http://vimeo.com/18067368
Both families are coming together for the holidays on the Central Coast. Kinsley and Jamie welcome visitors but the best time to come is after 1p and its always a good idea to text or call Jamie or Kinsley a few days before to see what their daily schedule is like. Kinsley has a new voice activated phone so can now take/place calls on his number 805,574,9200 and will have a new computer next week that will help with his email capabilities. I visited with Kinsley and Jamie on Sunday 12/19/10 and both are doing super well and are in excellent spirits!
We have added a new page under the tab “Kinsley Stories.” I shared some stories with Kinsley/Jamie that people told during the raffle at Kinsley’s Welcome Home Party and he said he would love to read more from his friends. Please use this page to post things like how you met Kinsley, funny stories/memories, and/or updates on you and/or your family as well as recent memorable kite/paragliding sessions.
Welcome Home Party Wrap Up:
On Saturday, November 13, beautiful blue skies and weather set the tone for Kinsley and Jamie’s welcome home party. Thanks to Tim Harvey for hooking us up with the Toucan Terrace Clubhouse! About 90 friends and family gathered to welcome home the new family and enjoy a killer bbq catered by Maui Mike and his family from the Bay Area. Paraglider Patrick Eaves put together a great slide show for the event and many kite vendors and locals kicked in to help with the raffle with prizes like a $1000 Carbon Underground Board courtesy of Underground, Mystic Harness from live2kite, a wetsuit/booties/gloves from Hyperflex USA, backpack from Dakine, Elemental Herbs gift pack, Dragon Pearl Tea Energy Shot Packs, kayak and whale watching tours from Sub Sea Tours in Morro Bay, Monavie, massages, hypnotherapy sessions, TKB subscriptions and more! In the end, we raised close to $15,000 to help Kinsley and Jamie with their medical bills and ongoing needs. Special thanks to Jonathan Port of PermaCity Corporation, an old friend of Kinsley’s from college, who laid down $10,000 to bring us to goal! Also as an FYI, local kiter Kurt Friedmann won the Underground board which we will be auctioning off shortly. All proceeds from the auction will be donated to the Kinsley ThomasWong Donation Fund.
Family’s Ongoing Needs:
Many of you have wanted to help out Kinsley and Jamie with their day to day needs but weren’t sure how. Now that things have settled down and they have a routine, if you have a spare morning or afternoon or want to devote a set day or two to helping out, just contact Jamie by email or phone! Help can range from providing ready- made meals, babysitting, light/easy therapy work with Kinsley. It’s best if you can do this a few days ahead of time or have a set day and time she can schedule in. her email is firstname.lastname@example.org and her phone is 805.295.0311.
Also, Jamie wanted to know if anybody has a connection to where the family can find a deal on a scissor lift table. If so, please contact her via email or phone as this is a purchase they need to make fairly soon.
Well, that about wraps up the latest. Kinsley, Jamie and Taizen send everyone their love and big hugs!
Merry Christmas and Have a Wonderful New Year,
Jamie, Kinsley, Taizen and Marina
Kinsley Update 10.21.10
We have pulled together a great team of doctors and professionals who come in to work with Kinsley continuing the therapy he received in rehab. With Taizen, now 8 weeks old, we decided it was best to bring in some help in for the mornings. When something is meant to be, the universe provides. We were blessed to meet an amazing nurse who has personal and nursing experience with spinal cord patients. She is amazing and an absolute gift. We are also working with a practitioner of Jin Shin Juytsu which has been a great experience and she is doing amazing work with Kinsley.
Kinsley is making great progress since being home. With spinal injuries we have learned that it is not about what Kinsley can physically move but what muscles and parts he now has control over. Since being home Kinsley now has sensation into the C4 region (pectorals and chest above the nipples; upper part of the arm/shoulder). He is also breathing with his full belly (prior was his chest and part of his diaphram). His cough is much stronger (working our way towards no longer needing the trach) and he is feeling good. Only setback has been working his way through shingles currently. No fun but we are hoping that when the shingles go away so will his spasms.
Taizen is now two months old and one strong boy, just like his daddy. He is a mover and quite a cutie. He keeps Kinsley and I smiling and laughing.
While at Santa Clara Valley Medical Center the rehab center celebrated their 40th anniversary. The foundation asked us to be a family they highlighted the story of how the hospital came together to make something amazing happen. Here is a link to the story: http://www.youtube.com/watch?v=04zW7GrgTMk
Also in the news... Our family was the lead story in the 11pm news yesterday and again on the 6am news this morning. Here is a link to the story - Thank You KSBY for doing a great job sharing our story: http://www.ksby.com/player/?video_id=6560&categories=1
Thank You again for all the love and support you have shown us, it keeps us strong and we are incredibly grateful. We have enjoyed seeing so many of our friends and family and appreciate all the help you have given us.
Jamie, Kinsley & Taizen
Kinsley Update 10.16.10
Kinsley has made remarkable strides given his level of injury, particularly getting off the ventilator in 20% the time often normally associated with his condition. He is truly superhuman. He also has been aggressively working on exiting all pain medication, which from my understanding, he has largely accomplished.
Kinsley keeps very busy with a host of physical therapy, acupuncture and other treatments. The donations have provided advantages for Kinsley not covered by insurance, such as acupuncture treatments to clear and activate meridian channels, home care, his van lift, advanced quadriplegic chair, etc.
Everyone went on with their day smiling and with the knowledge that Kinsley is improving, while baby Taizen brought joy and good vibes to everyone. The kid smiles all the time - just like daddy.
Kinsley Update 10.08.10
Taizen amazed me. His little neck is already strong, he is trying to stand and Jamie/Kinsley said he has already learned to roll on his stomach and do other stuff that babies normally don’t do for a few more months. He is the most adorable little boy and his hair is a Eurasian combo with some red in it from Jamie’s side of the family. Taizen will be one handsome little devil!
They found a great RN aide to help them out who started yesterday and is providing great help/support to them both. Both said that yesterday was their best day in awhile as they have been super busy settling back in and getting everything set up at the home, doctors, and caregivers. Kinsley has also been getting accupressure treatments which Jamie said are helping him a lot.
Kinsley is excited to get a new touch screen computer with voice recognition so he can get back to work. Jamie said she will soon set up some fixed days when it would be best for people to visit (best time is after 1p) -- they're still getting their day to day schedule down and nailing down doctors and such -- so much to do! Remember, to save November 13 for Kinsley and Jamie's welcome home thank you party. Details will follow next week after we have shipped the December mag to the printer! Have a great weekend:-)
Update from Jamie 9.15.10:
Kinsley is doing amazing and has accomplished his goal of getting off the ventilator -- he has officially been off it for 72 hours now!!! He is happier and feels better breathing which is wonderful. In typical Kinsley style, he exceeded normal progress and accomplished this three days ahead of schedule. He will still have the ventilator in place when he comes home, but will only have to connect to it if needed.
Over the weekend the family had another exciting milestone - outings out of the hospital! Friday and Saturday they were able to head out of the hospital and drive to local parks to enjoy some family time together outside and somewhere new. Not only did it let them really get comfortable using the modified Sprinter but it also let the family get a feel for what being home and venturing around will be like. The pictures are of their outing to the rose garden. Jamie said it was wonderful to be a family and have quality time to chat, relax and just be in a different setting.
THOMASWONG’S HEADING HOME
Thanks again to everyone for your love, support and visits. It means so much to both Kinsley and Jamie and is very motivating to Kinsley to see and feel everyone around him.
Kinsley, Jamie, Taizen and family
SPREAD THE WORD
The wine donation drive is still going. Please spread the word and send the info out to your family and friends – let’s sell this stuff out!. We especially need to move the Rose'
We are still trying to nail down a welcome home party for the family in mid Oct to mid Nov. Will update as soon as we can coordinate everybody’s schedule……
9/6/10 Health Update, From Jamie:
Jamie & Kinsley's new addition - Taizen
The baby registry is hosted on: http://www.thebump.com/registry/home.aspx
Just type in Jamie ThomasWong
Jamie went into labor yesterday afternoon and is expected to deliver sometime late morning or around noon today. Steve Davies and family are with Kinsley and Jamie awaiting the call for Kinsley to join Jamie in the delivery room to welcome their new son. Woop woop!
I spoke to Brian Ackerman & Steve Davies who visited Kinsley yesterday. They said Kinsley looks rested and sleeping better after getting a botox treatment shot in his neck. His spirits are high. Also, Kinsley’s head injury caused no permanent damage and he is doing some business work with Jamie; he is back to wise cracks with his visiting friends. Also, Kiinsley has improved and finally been moved into the Physical Therapy section of the Santa Clara spine center. Now he can better focus on his recovery. With no brain damage at all, I am informed this bodes well for Kinsley’s recovery outlook; given the brain can continue its efforts to reconnect with the spinal cord.
We have also identified more details on Kinsley’s ‘non-insured’ medical costs at about $85,000 initially – for advanced wheelchairs, lifts, etc. Details and a breakdown is on the How We Can Help page of this website. We will be initiating a donor drive shortly.
The one thing we are learning about Spinal Injuries is that recovery is a process – not a science. We wanted to share more details about where Kinsley is in this process, but first clarify that he currently does not have mobility in his legs or arms. We remain positive and optimistic that when the spinal swelling recedes, he will regain his sensation and mobility. The Doctors and the family focus on what achievements Kinsley can accomplish in the next few months and those include:
1) Pain Management is one of the number one goals we are working on. As nerves are able to travel to other parts of his body he is experiencing pain in the form of muscle spasms. We view the pain as a positive sign that nerve endings are getting thru the swelling but it’s also hard for Kinsley to focus on other parts of his rehab until that gets under control. They are helping him with this pain management through use of ice, massage and medication.
2) Ventilator / Breathing: Kinsley injured his 5th and 6th vertebrate but the swelling is up to the third vertebrate which controls his diaphragm making it difficult to breathe on his own. This is an area we are seeing a lot of improvement on. He started out getting oxygen through a Trach in his neck and forcing 100% to go only into his lungs. He then progressed to having a valve put in the Trach which allows some air to travel up to his vocal cords which allows him to talk. Today they leave that valve in all day long – which is the first major step in him going off of the ventilator altogether. His lungs are strong and all of his sports have helped him to recover faster in the breathing area.
3) Sitting up in a Wheelchair: Kinsley has progressed from sitting up 2-3 hours a day to sitting up all day long. He is able to do more physical training while sitting up and it also helps strengthen his lungs. Because he is doing so well they just relocated him to the Rehab center to continue his progress.
The family is working full-time preparing for two things:
A) Taizen’s Birth: Jamie is 10 days from her due date but is starting to experience signs that Taizen might just be coming a little early. The hospital has been great and has gone above and beyond to make the accommodations necessary so that Kinsley can be a part of the birth of his son. They say Taizen looks great and is around 6 ½ to 7 pounds currently.
B) Preparing for Kinsley’s return to Central Coast: We are working with the rehab center on the list of items needed to take care of Kinsley at our home. They include ordering a special wheelchair, adding a wheel chair lift to our Sprinter (Van), arranging for ventilator equipment since he probably won’t be completely off it before coming home. We have sent housing plans to the rehab facility so they can let us know what other wheelchair assessable items we need to put into house.
Prognosis: We get asked all the time what is the prognosis for Kinsley. If you ask us (Kinsley and his family), we firmly believe he will have a full recovery but it will take a year or so to accomplish. Doctors will give you the prognosis for the “average person” but we all know Kinsley is NOT AVERAGE! He couldn’t be farther away from average and I think you all will agree to that. Kinsley’s attitude has been nothing short of amazing. He understands very well how serious this injury is but he always has a smile on his face and keeps pushing himself to accomplish that next step towards his recovery.
Many people focus on the negative details that he is currently a quadriplegic. Our family strongly believes in the power of thought and we do not see him in those terms. We greatly value everyone who sees him as walking the beach with Jamie and their son, whether that is next year or the year after. That is why these updates focus mainly on his current accomplishments – not how many accomplishments he has yet fulfilled.
We really appreciate your outpouring of support (with prayers, cards, photos, and financially). It means so much to know you have people solidly supporting you during these difficult times.
Kinsley and Jamie wish to extend a heartfelt thank you to everyone for your generous donations, cards, emails, and photos! Every night, Jamie goes over everything with Kinsley and it just makes his day. The outpouring of love, support and encouragement has been very inspirational to them both and they are very appreciative and grateful for the good friends they have made over the years.
Kinsley is still on the acute side of the rehab center and has been pushing himself very hard in PT. He is closer to moving to the other side, but no timeline or date has been set yet as to when this will happen. He is in good spirits and has mastered being able to talk with the trach -- doctors have and will continue weaning him off it until he is strong enough again to do without the support. In the meantime, he has been enjoying some great home cooked meals from friends and family. Visiting is still limited to weekends. Those wishing to visit Kinsley, please text Jamie to set up a day and time.
Jamie's got permission for Kinsley to be in the delivery room when Taizen comes - which is great news! The future little 'ripper' is expected to arrive August 31 and when they return, we will throw a huge co-ed baby shower to welcome the new family homeJ
Unless Jamie contacts us otherwise with news that she wants to get out there, at this point, updates are going to be coming about every two weeks+. We’re in communication every few days so rest assured, that if there’s something to tell, you’ll be hearing about it!
Steve Davies just came back from visiting Kinsley and helped Jamie with Physical Therapy. He said that Kinsley has already improved by leaps and bounds being in the new facility. Not bad progress for less 48 hours! Go Kinsley Go!
Jamie said that Santa Clara Valley Medial Center is definitely where Kinsley needs to be. They understand athletes and are aggressively getting him ready for the intensive rehab program. They have two sides there, one is the more acute side which is where they are for now. That program should last between 4-6 weeks. Kinsley is very motivated and positive and has his goals in mind.
The spinal center will be fun for him as well as a lot of work. They have a very cool and specialized gym, courtyard to eat lunch outside, living room for classes they hold on various topics each night and rooms of 2-4 people (all like him). Jamie thinks it will be really good for him once he is down there to have others around him that he can relate to, all going through the same process. The gym is full of music blaring so it is a fun and active atmosphere, not a clinical hospital feel which will be good.
VISITING INFORMATION (more to come in later): WEEKENDS ONLY FOR NOW:
For visiting - this will change over time. While in the acute side he is limited to two visitors at a time. Sunday is a free day outside of what the nurses and doctors need to do so by far the easiest. So, between 12noon-4pm if anyone wants to come by send Jamie a text message and she’ll arrange it. Saturday will change based on his sessions with the therapist but they should be good most of the time between 3-5pm for visiting. Just be flexible because the schedule is ever changing and dependent on what the doctors and nurses need to do and how Kinsley is feeling. Other times may be possible just depends on the day and the schedule. Just be patient with texts – Jamie may not always be able to respond quickly.
Kinsley was cleared today to move up north and will be heading to the spine rehab center at Santa Clara Valley Medical Center tomorrow. Marina got a chance to see him today and both he and Jamie are in good spirits, excited to see the new facility and start treatment with the specialists. Kinsley got the staples taken out of his head and is sporting a new shaved look. It looked pretty bad ass :) When Marina walked into ICU, Jamie and two nurses were standing outside Kinsley’s room and both nurses were commenting on Kinsley’s smile. It was great to see him and the deep bond between him and Jamie. Marina couldn’t help but leave with a smile on her face as well. Kinsley is doing well and his lungs are clearing up. He finally got to have a smoothie and some solid food.
Kevin Barrett, a Santa Barbara kiter who is often up in SLO, is trying to accompany Kinsley in the ambulance tomorrow along with his friend Mike of San Luis Ambulance. He is with the Santa Barbara Fire Department and it would be cool for Kinsley to be accompanied by a kiter crew. Not sure what status of that effort is as of this update. Not that Kinsley is hurting for people that want to go with him. He’s got four other friends who are also with San Luis Ambulance and the crew that brought him in have also been checking on him frequently. Are we surprised? Even in crisis, Kinsley manages to affect people with his unique spirit.
They will need some time to settle in so will update again when visitation can begin with details on hours, etc – it will be at least one week….
As a reminder Steve Davies, Kinsley's best friend from college, has organized about 10 rooms at nearby friends/family to the Santa Clara facility - if any of you need a place to stay. Jamie and her family have arranged to stay at a hotel one mile from the rehab facility, so she can get some rest in-between rehab sessions.
Thanks to everyone for sending your inspirational stories, sharing thoughts with Kinsley and Jamie and helping spread the word to the many people Kinsley, and now Jamie, have touched throughout the years.
They adjusted his oxygen to allow fewer but deeper breaths which has been a huge help. They had it set up for more frequent - shallow breaths that the "average patient" needs. Kinsley's lungs are so developed that he kept complaining of having trouble breathing. The adjustment really worked - his lungs are clearing and he is sleeping better.
Kinsley is experiencing common problems associated with severe neck injuries. MRIs and CAT scans show that his spinal cord was not damaged. His spinal column is just very narrow and thus swelling has a greater effect on him. In the meantime, physical therapists provide him with exercises to keep his muscles in shape so he will be ready for Rehab in Santa Clara. As soon as his lungs are clear he will be moved to Santa Clara Valley Medical Center that specializes in Spine Injuries.
7/25/10 Health Update
Saw Jamie and family yesterday and happy to report that everybody is making sure that she is also taking care of herself and Taizen :) Kinsley continues to make progress with his PT and we anticipate he will move north sometime mid next week --doctors and Santa Clara facility are coordinating best day according to when they feel he has fully stabilized and is safe to move by ambulance.
Kip Lytel, Steve Davies and myself are putting the finishing touches on the website which will consolidate all info into one place, including a link to a new dedicated facebook page where you can post your thoughts, pictures, video greetings, etc. This will go live tomorrow. I will send out an official email and we ask that you all help spread the word through your various networks -- Kinsley and Jamie have touched so many people’s lives who like you, are eager to learn how they are doing, and send their love and words of support.
Yesterday Kinsley had huge success with his physical therapy sessions. He was able to be in a sitting position – holding up his head and moving it side to side. He also is able to shrug his shoulders. It’s these little successes that make everyone so excited with these injuries. We are all very confident that Kinsley will beat the Rehab Record for regaining use of his body because he is so strong and in such great shape. It will be no surprise to all of you that Jamie is being such a strong patient advocate for Kinsley. They are extremely close and both of them light up when their eyes connect. She is keeping him thinking positive – celebrating his successes – and focused on getting the rehab he needs to chase after their son Taizen who will be joining them shortly. One positive note is that Kinsley will have some real close bonding time with his new son when he arrives since life has directed him to take a momentary pause before moving forward.
Marina, Steve Davies, Jon Elick & Kip Lytel all were able to see Kinsley and assist in his Physical Therapy maneuvers.
7/21/10 Health Update
Just a quickie update on our buddy….
Kinsley is doing better today and has a busy schedule with lots of therapy like yesterday. They are prepping him for transfer up to Santa Clara Valley Medical Center but there is no news yet as to when. He will not be able to receive any visitors until he moves up north. Jamie says he is getting stronger and is able to move his neck around a lot more and control more of the muscles in his shoulders so making progress just takes time.
Kip Lytel has been doing a great job putting together the website and outreach campaign to the local (San Luis Obispo), paragliding and kiteboarding communities. It should be live shortly. Steve Davies has been instrumental in helping behind the scenes with everything and Marina Chang has been very helpful in outreach and communication efforts to all interested parties. So all in all, the best we can all do now is to keep the positive thoughts coming for Kinsley, Jamie and family and spread the word on the outreach campaign when it’s complete.
7/20/10 Health Update
Kinsley will most likely still be at Sierra Vista for another one to three days so you can still visit him there. Bear in mind that visits are dependent upon him being awake and not in therapy, which he is doing several times a day. When Kip, Jon, Steve and I visited with him yesterday he said, thank you for coming, then why are you here? We got a little chuckle out of that comment :)
Kinsley had a good night and yesterday, felt some coldness again in the palm of his hand and bottom of his foot. Today, he had food for the first time and sucked down two smoothies. He also started a bit of PT and is more lucid than he’s been since the accident.
Marina got to see him for about 15 minutes and let him know of the worldwide and local support he has gotten from the kitesurfing community at large. Marina told him that hundreds of people were posting about what a positive impact he has made on the sport and their lives, whether he be a good friend, acquaintance, customer, or someone he just shared a smile and ‘hey bro’ with on the beach. The first thing he asked me was what happened. He then said he didn’t think he would be kitesurfing for awhile. Jamie and I both said he’d be kiteboarding before he knew it and that Vanuatu was waiting for him, Jamie and Taizen.
Kinsley can receive visitors one at a time so if you happen to be at the hospital and he is awake, you will be able to go see him for bitJ
Jamie starts dealing with insurance tomorrow to see if they can move Kinsley to Santa Clara Medical Center and if insurance will cover it.