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'Help Luke Break Free From His Traumatic Brain Injury'

$293,830raised of $300,000 goal
97%

Organizer: Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others) Beneficiary: Luke Simpson and Family

On November 4, 2013 a serious bike accident left Luke Simpson almost completely immobilized due to a TBI. Your donation will help Luke recover motor function and get back home to his family.

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Fundraiser Details

Luke Simpson is pretty awesome.

A strong, smart, energetic, generous, and witty guy who loves music, laughter, and new experiences. Loving father of two, husband, son, brother, uncle, friend. Enthusiastic biker, skier, hiker, snowmachiner, surfer, climber. An incredibly hard worker, bread-winner and generous soul. The kind of guy who is easy to like and is loved by many.

But something pretty awful happened to him.

On November 4, 2013, Luke was in a serious mountain biking accident at Kincaid Park in Anchorage, Alaska. Due to the extraordinary efforts of his friends, Luke’s life was saved. Unfortunately, he sustained significant head injuries that led to a massive stroke in his brain stem. The stroke cut off neural connections between his brain and body and left him completely immobilized and without the ability to hear or speak.  For now, Luke communicates by reading messages and responding with blinks or up and down eye gazes. He is doing well cognitively and has regained some motor function since beginning therapy, but it is still unknown how fully he might recover. 

YOU can help in a BIG way.

To give him the best possible chance at healing, Luke needs intensive rehabilitation in a hospital specializing in traumatic brain injuries. To his family's relief, he was approved for admission to Craig Hospital in Denver--an excellent facility that is widely acclaimed for its specialized treatment of TBI patients, with high success rates.

Luke needs more time at this facility than his insurance company will pay for. The hospital requires a three-month committment, and the insurance company will only pay for one month. This means the Simpson family must pay for the remaining two months out-of-pocket--at a cost of $180,000! Luke’s friends are working to raise these funds, plus other significant out-of-pocket costs associated with his injury and care (such as adaptive equipment, a wheelchair accessible van, and necessary home renovations for accessibility). 

Based on information we have gathered from medical experts and Luke's insurance company, we believe that in order to give Luke the very best chance at recovery and quality of life, we need to raise a great deal more than our initial goal of $75,000. We've set our new goal at $300,000. This is a steep number, but we know that if we apply the same dogged determination we have always admired in Luke, we will get there. Luke has put a lot of good out into the world, and he has a lot of good coming to him in return. 

If you have already given to Luke's medical fund, THANK YOU. If you have not yet had a chance, we appreciate any amount you are able to donate. Every little bit helps us get closer to our goal. Please help us spread the word to people who would like to support Luke and his family.

- Team Luke Simpson (Andrew Steiner, Ann Loyd, Cindy Bierne, Ellen Campfield Nelson, Josh DeLong, Regan Brooks, Sarah Monkton, Tim Alderson, and all the other friends and family who've pitched in)

DONATIONS BY CHECK/WIRE
Following is the medical account information for those who prefer to wire funds or send a check. We will include your donation information on this site along with the people who donated online, unless you indicate that you wish to make an anonymous donation or hide the donation amount. If mailing checks please include all of the account information to ensure that it will be deposited correctly. Thank you!
 
AlaskaUSA
POB 196613
Anchorage, AK 99519

Name: Kristin Simpson
Acct#:  1100018061196

(To wire, routing no. is 325272021)

Contact the Organizer
Updates

Updates

04/13/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
SETBACKS AND GAINS

Hi everyone, 
 
I know it's been a while since the last update and you're probably all anxious to know what's been happening at Craig. It's been a period of ups and downs for Luke.
 
Luke's release from the hospital was delayed by an infection. After an extended period on antibiotics, Luke was finally discharged into outpatient on April 2nd. Luke's insurance picked up the last two weeks before discharge as hospital days, so that was good news. The first evening at home in the apartment went pretty well, and Kris managed it all okay. Luke was struggling with a cough though, and was readmitted to the hospital a few days later because he was having trouble breathing. He's back at home and doing well now.  While in the hospital, a doctor thought he witnessed Luke have a seizure. Multiple tests all came back negative for seizures and stroke, but because the doctor thinks he saw one Luke now takes a low dose of anti-seizure medication. 
 
Luke's primary doctor is concerned about the amount of care Luke is requiring. Luke seems to struggle with nausea, vomiting, coughing fits, and infections on an ongoing basis. He suggested that Luke and Kris consider going to Quality Living, Inc. (QLI) in Omaha, Nebraska after outpatient at Craig. QLI is a transitional facility for TBI patients to better prepare them to move from hospital to home. Insurance would cover three months at this facility. This would give Luke a little more time to recover before going home. He will probably be much more stable after three additional months, so it would be easier for Kris to care for him. Luke would receive physical, occupational, and speech therapy everyday Monday through Friday at QLI, and they may also have some specialized programs to continue other rehabilitative therapies he's started at Craig. This has given Luke and Kris something to think about and they are considering this option.

Luke now owns both a power wheelchair and a manual chair to use at home. His insurance approved payment of his power wheelchair, which arrived last week.  The manual chair is a donated chair that Craig is fitting up for Luke to give him. An electrical stimulation unit has also arrived. If insurance doesn't pay for it, it will be paid for with donated funds.  Kris is getting trained to help Luke use it. 

Luke is getting really good with the Tobii eye gaze system. He is starting to "talk" using the keyboard and eye gaze software. It is much faster to use for communication than the dry erase board. He needs a break after an hour or so, but he is getting stronger and better the more he uses it. Luke still needs to use the large buttons because of his eyesight. When he is able to use smaller buttons he will be able to text and email, and hopefully someday he will be able to use the internet too. With any luck, this system will be covered by Luke's insurance so he can take it home. 

Some good news is that Luke's control over his upper body may be spreading. He learned to nod, which we reported in the last update. Since that time Kris noticed that his head kept tipping forward out of his headrest. Luke told her that he was strengthening his neck, and not to adjust it for him! Luke's doctor said that once he gets control of something (like the nod), he can strengthen it and it can spread. It made Kris very happy to see that after Luke mastered the nod he was able to begin working on his neck. One of Luke's therapists also commented that she thinks his neck and core are getting stronger. Hopefully we will see him continue to gain control over his upper body.

We've known from the beginning that Luke's recovery would not be easy, nor would it follow a consistent trajectory. There have been gains and setbacks. But Luke has shown a determination to improve, and a willingness to work incredibly hard to achieve even small improvements. We are all proud of him, and are still hopeful for the future. 

- Sarah





03/27/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

HARD WORK

Hello all,

Here is the news from Craig Hospital this week:
 
Luke continues to work on swallowing water, with some success. This must be a good feeling for him after nearly five months without drinking water!
According to Kris, Luke is also doing "awesome" with Tobii eye gaze software, and his speech therapists are hoping to put a request in to the insurance company next week to pay for his own Tobii computer system. This will be so important to help Luke communicate when he is at home. Using the low-tech whiteboard to communicate is effective but a much slower process. Although Luke tires out when using Tobii now, he is improving and once he has it mastered it will be a much better way to communicate.
 
Luke is also doing a great job with his nod, and is working with technology specialists to take advantage of it by developing a switch placed under his chin.  Kris is really hoping he could use this switch for a nurse call and maybe even a wheelchair tilt. 
 
In the evenings Luke has been going back to the apartment with Kris and the kids, and staying until bedtime. Of course, he loves being with his family and very much looks forward to the time when he will be discharged into the outpatient program so he can stay with them overnight.  This was supposed to happen last week, but because of a recurrent infection he was unable to go. The bacteria is somewhat resistant, but he is now on IV antibiotics they hope will get it this time. 
 
Luke seems pretty anxious to get back to Alaska and his home, and he and Kris have been communicating about their plans for the house renovation. Luke has made some suggestions of his own.
 
He is really beginning to realize what a bad accident he was in, and wrestle with questions like why he can't move and whether he is going to be able to get better. Overall, his attitude seems to be positive and optimistic, and Kris knows Luke intends to do everything in his power to heal. Luke's close friend Dan Oberlatz visited recently and said he was told by members of the therapy team that they have never seen a harder worker than Luke. I know that doesn't surprise anyone who knew him before the accident. 
 
Thanks for all your continued support for Luke and his family. They very much appreciate it!

- Sarah





03/18/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
TEAM LUKE CLASSIC GOLF TOURNAMENT

Hi friends, 


I just wanted to let you know about another fun fundraising opportunity, this one from Luke's brother Allan and the amazing Simpson family. They have organized the "Team Luke Classic" golf tournament at the Meadow Wood and Liberty Lake Golf Courses in Washington. 

Here are the details:

Sunday, May 4th
8:00 a.m. Shotgun Start
Meadow Wood and Liberty Lake Golf Course
$300 per team -- Price includes 18 holes of golf, riding cart, lunch, and prizes (trophies for the top 3 teams) Longest Drive, Closes to the Pin, Raffles, and Silent Auction

Get your entry form and more details on the Team Luke Facebook page (www.facebook.com/supportlukesimpson).

This sounds like a really fun event for those in Washington (or those looking for a reason to be in Washington). If you're not able to play golf there will be great items to bid on at the silent auction!

- Sarah





03/12/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
Luke is killin' it!!!

Hi all,
First of all thank you to any of you who made it to the Bear Tooth Theatre for Luke's "Benefit For A Better Man" Fundraiser.  Final numbers are in!  We raised over $8500 in combined ticket sales and "Buy A Beer for Luke" pass the hat donations.   It was a great event filled with both warm and familiar faces and others who were just compelled to attend.  Luke was very thankful and also EXTREMELY excited that Pearl Jam was involved-- he kept telling folks in Colorado about it.  Thank you all, again, for your amazing support!  We are very close to realizing the $300,000 goal.  
 
Some great updates from Kris this week:
It's been sunny and beautiful in Colorado lately. Kris and the kids went on walks with Luke through the neighborhood two days this week.  And to top it off, they had their first big outing "off campus" to the Denver Aquarium.  Now that they have the car pass, Kris should be able to take Luke places by themselves. Kris sounded so happy to get off the grounds and out with her whole family.  She hopes to do another off site trip soon as possible.
 
With the donations already raised, Kris bought a specialized van in Salt Lake City. It's a Ford E250 with a lowered floor so Luke can roll in, and ride in the wheelchair.  It's having 4wd installed now and it will be another month or two before its finished. Luke will not be held back by our Alaskan winters in this vehicle! Again, I must pause to say "Thank You", without the support of all of you, this would not be possible.
 
Luke had been asking to drink water so he had his first swallow trial yesterday and did better than anyone expected.  He was able to swallow fairly quickly upon request.  Kris hopes that he will continue to work with his speech therapist on a daily basis. Luke feels so much better to be able to work toward a goal and see some improvement.
 
Another great step forward: Luke's neuropsychologist noticed yesterday that Luke was nodding his head when he said yes with his eyes. Luke said he was doing it deliberately, and repeated the movement several times when asked. How wonderful for him to move with intention and noticeably! Go Luke!  Kris will talk to the technology people tomorrow and see if they can use the movement for a switch &/or nurse call light. Luke also laughed when asked to and repeated it when asked. It sound more like a little fake laugh than his real laugh, but it would be neat if he could get some control over vocalizations.
 
Remember how Luke has said he felt like his left side was missing? Now he says its there, but it feels distorted. Both the sensation and movement feel distorted to him. These changes are all good and it appears that his healing is headed in the right direction. 
 
Luke's no longer on oxygen. He had started it a month or so ago when he had a bad cold, and had continued to use it after the aspiration.  He also had the semi permanent eye weight put into his right eyelid last week. The procedure went well, his eyelid is swollen and purple/yellow, and he will know in another week or two if the amount of weight was estimated correctly. 
 
A wonderful example how Luke is owning his recovery and working his tail off to get better and improve:  Luke says he spends the majority of his awake time in bed trying to move and visualizing moving. He is determined to regain movement and not need his wheelchair - it is wonderful and uplifting to hear about his determination and drive to heal and take ownership of his healing! Kris mentioned that she has heard many stories and anecdotes of people with traumatic brain injuries/strokes reconnecting their minds to their bodies by doing this, so she was very relieved to hear he is working on it too. 
 
Kris has started her nursing training, to better prepare her for Luke's discharge.  The family is already readying for a move to a larger apartment that will better fit Luke's hospital bed.  Luke may be discharged from inpatient as early as next week or the week after. After spending time talking with Kris about this, an earlier discharge may be better for Luke because he will have more specific and greater amount of therapy time as an out-patient than he has had as an in-patient.
 
Last, but certainly not least, Sam (Luke's brother) & Brandi are in Denver for a month or so. This has been great for everyone:  Luke gets more people to talk to, and Kris gets to spend more time with the kids. Sam brings out the best in Luke (recall Luke's amazing reaction when Sam visited him right after the accident).  Recently, after a day of hard work in therapy (with Sam by his side) working with his eye gaze technology, Luke finished the day with this message to Sam:   "Good day...... Killed it!" --- if you can hear Luke's voice - you can imagine his self confident voice, with a high noted inflection as he gloats about his awesome day in therapy. 
 
Keep Killin' it Luke!! 


~ Ann 





03/11/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
Hi everyone, 

We'll have an update soon on the Bear Tooth fundraiser--what a great night! For now, here's another way you can help us get to our fundraising goal. Luke's brother-in-law Beau Cooper is carrying on a March Madness tradition he shares with Luke, but this time it will benefit Luke's medical fund! Read below for a message from Beau with details. 

Thanks to all for your support so far--there have been a number of offline donations we haven't been able to enter yet, and we are getting close to our goal!

Sarah

* * * * *
Hi all.  For those of you who don't know me, my name is Beau and I'm Luke's brother-in-law.  (Kris’ sisters’ husband). For the last several years, the Simpson’s have made the trek from Alaska down to Southern California to visit us around this time of year and Luke and I usually sneak away for a day/night to watch March Madness basketball.
So this year will obviously be a little different, but the basics will remain.  This year I am organizing a March Madness bracket (The Luke Sidewalker Challenge) but the payouts will be changing.  The winner of the pool will get 15% of the pot, 10% will go to 2nd Place and 5% will go to 3rd place.  If my South Dakota math skills serve me right, that leaves 70% which will go to Luke and the family.
Below is a link to the bracket.  The tourney doesn't start until March 20, but you can enter anytime between now and then.  Brackets will become available to fill out on Monday March 17.
What makes it even better is LUKE will also be filling out a bracket! 
The fee is $20 per entry and you can have as many entries as you'd like.  You can send your money through Paypal to bdcooper77@gmail.com or mail checks to:

Beau Cooper
5836 Emerald Street
Alta Loma, CA 91701

Here is the link:
http://teamluke.mayhem.cbssports.com/e?ttag=BPM14_em_cbsinv
Our Group password is: Team Luke
Hope to see a lot of entries, both for Luke and me (since I'm totally going to win).
Thanks everyone,
Beau Cooper





03/02/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
BACK IN THE RING

The work continues at Craig Hospital. 

Luke has been spending lots of time in therapy and much of it with e-stim equipment. He has been using the e-stim bike, and got set up for an "e-stim hand bike" last week (I have to follow up with Kris to ask what that is). They are also using e-stim on Luke's face to help stimulate his face muscles. E-stimulation is a cutting edge treatment for TBI and spinal cord injuries, and is showing a lot of promise for helping people regain some motor function. It's wonderful that Luke has so much access to it at Craig. He is also still enjoying biking on the MotoMed bike, which he is able to operate mostly by his own power, and asks to do this on weekends and during his free time. 

Luke's fractures have healed and he no longer needs a neck brace, which is wonderful news. I can only imagine how uncomfortable it must have been for him to wear it 24/7. He is on a weaning schedule now--when his neck gets tired he wears it again for spell. With any luck, eventually he will not need the brace at all.  

Luke got new glasses a while ago, but he still can't read small print because of involuntary eye movements. Hopefully this will improve with time. A procedure to fit a semi-permanent eye weight is scheduled for next week--this will help him close his right eyelid when sleeping.

Luke seems to be feeling better since an adjustment to his feeding tube. Overall, it sounds like the team at Craig zeroes in on problems--even little one--and works to correct them. This approach will have an enormous impact Luke's quality of life. 

Kris's updates have been less frequent for two reasons. First, she has been very busy talking to Luke now that his post-traumatic amnesia seems to have cleared.  Second, she has been busy putting things in order to get ready for discharge. Kris has spent a lot of time researching wheelchair accessible vehicles, house modifications, wheelchair, and other equipment. Right now Luke is scheduled to be discharged from the outpatient program on March 31st. They still plan on staying at Craig for outpatient for a while. Luke will stay in the on-campus apartment with Kris and the kids, which I'm sure will be a wonderful change for him.

Kris's dad is flying to Salt Lake City tomorrow to purchase a used van. The van has already been modified for wheelchair accessibility, but it will need a new lift and four-wheel drive. The total cost for the van and modifications will be close to $50,000, all of which will come out of donated funds--so THANK YOU to all who have donated. Together we bought the Simpson family a much-needed vehicle! That's pretty cool, and I know it is greatly appreciated.

The best news of the week came when Kris talked about Luke's cognitive function. She said, "Luke seems more himself all the time. He can laugh!" He is asking about finances, health insurance, Finishing Edge, home modifications, etc.--all the details we would expect him to ask about. What a relief to hear that, and for Kris to witness--It has taken almost four months just for Luke's fog to lift, which I think says a lot about how badly he was injured, how lucky we are to still have him here with us, and how patient we need to be as Luke heals. His recovery is still only just beginning.   

For the first time, Kris told Luke that his friends, family, and community raised funds to pay for his time at Craig.  As expected, he responded with emotion. He also told Kris he's going to beat this. Those are the words we've all been waiting to hear. It sounds like Luke is back.

- Sarah





02/26/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
BEAR TOOTH FUNDRAISER 

We just added the event poster advertising the March 5th fundraiser to the photo gallery. It was designed by our own Ellen Campfield Nelson. If you can make it, please come! This is going to be a special event for Luke's community and with any luck we'll meet our fundraising goal. Get your tickets now, and please pass the word--we're hoping to sell out!


http://beartooththeatre.net/movies




02/24/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
JOIN US FOR AN AWESOME EVENT TO BENEFIT LUKE 
MARCH 5, 8pm. BENEFIT FOR A BETTER MAN

Bear Tooth TheatrePub

Get your tickets now! :-)

http://us3.campaign-archive1.com/?u=0debc672181a7d318bb71762a&id=39a24fe28c&e=cb4b484d99


If you are in Alaska, or looking for a reason to visit, please join us for a great night to support Luke in his recovery.  100% of the ticket proceeds will go to Luke and his family to support his recovery (thank you Bear Tooth for hosting and donating proceeds to Luke's medical fund and thanks to Pearl Jam for donating the film).  We would love to see you there and invite your friends! Pizza buffet followed by Pear Jam documentary PJ20. Plan on arriving early. Check out the link above. (Info also below).

Benefit For a Better Man
PJ20 Rockumentary
Proceeds benefitting Luke Simpson
Bear Tooth TheatrePub
March 5, 2014, 8:00pm 

Join us for a special showing of Pearl Jam Twenty, a rockumentary from acclaimed director Cameron Crowe.  Funds raised at the event will directly benefit local cyclist (and long-time Pearl Jam fan) Luke Simpson and his family.

Tickets: $25 including pizza buffet.  Beer and wine available for purchase.

Special ticket presale for Team Luke supporters at:  http://beartooththeatre.inticketing.com/private

Password:  lukesimpson

Booths available through the Beartooth box office for $70 (2 person) and $140 (4 person).

For more information on Luke, please visit www.YouCaring.com/supportingLuke

Many thanks to the Bear Tooth for hosting this event and donating all proceeds to Luke's medical fund.

Special thanks to Pearl Jam for contributing movie rights and donating the film.

Thanks for your continued interest and support for Luke!





02/20/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
GETTING GOING

There has been a bit of encouraging news since our last update--Luke can, in fact, feel his left leg move and he knows where it is in space. This means the "left side inattention" we mentioned last week may not extend down to his leg. This would be significant to his recovery, so let's hope that's the case.  

Kris reports that Luke has cold pain in his shoulders and upper arms. This is probably caused by nerves reconnecting. He still has cold pain in his left hand. We hate to hear Luke is in any kind of pain, but if there must be some, let's have the kind caused by reconnecting nerves!

Luke has been pedaling on the MotoMed bike, and it probably won't surprise anyone to hear that he likes it. He's able to pedal between 18 and 35 minutes each session. He pedals slowly, but completely by his own power. The bike will provide mechanical assistance if necessary, but so far Luke hasn't needed it. He can use this bike anytime, as long as someone else isn't on it. Knowing Luke, he is on it every chance he gets. I'm sure it feels great to him to move, and be an active participant in his recovery. He also uses an "e-stim" bike twice a week, which is a little different than the MotoMed because it uses an electrical current to stimulate his nerves and cause muscle contractions allowing him to pedal. The team will try facial e-stim next week.

Kris sent a video of Luke using the "power arm robot" to play a computer game, and I will upload it here at some point if I can. Luke moves the arm, which causes a teacup to move under falling raindrops to catch them. If he needs help, the robot arm kicks in.  When Luke is doing the work, the teacup is white, but when the robot is doing the work, the teacup turns red. You can see in the video that for the most part, Luke is able to move the teacup himself. At one point, the teacup turns red because the robot arm had to activate to move the teacup a long distance. But then at the end Luke moves the teacup almost halfway across the screen by himself. You can see his arm move in sync with it, at least six inches from right to left, and that is pretty darn cool. The video really shows how far Luke has come since his accident, and the remarkable opportunity he has at Craig to work on recovering as much motor control as possible.

The team is still fine-tuning communication with Luke, and have reverted back to the eye gaze method. Luke likes it better than selecting with a switch. They are using a fiber optic switch pointed near Luke's head for a call light. Right now it is difficult for Luke to activate the switch voluntarily because of its positioning, but the light will go off if he coughs.

Luke had a complete eye exam, and will receive bifocals this week. There is no doubt he will appreciate having clear vision again--it must have been incredibly annoying to have blurry eyesight on top of everything else! Now, at least, he can see. We are still hoping his hearing and speech will come back too. Next week they will focus on developing Luke's voice and swallowing during speech therapy. Interestingly, the train sound that Luke has reported in both of his ears is getting louder. Kris described it as a "low thrumming," that is "coming toward him and going away." Luke thinks it's annoying, but we're hoping it might mean his hearing is coming back. So far no doctor has confirmed that, but Kris was planning to ask.

As we mentioned in the last update, Luke is beginning to ask more questions and talk about the future, indicating he is coming out of the post-traumatic amnesia phase. This is wonderful news for him, and I know it means the world to Kris to have meaningful conversations with Luke again. 

We are getting close to reaching our $300,000 fundraising goal. Please stay tuned for details on a March 5th fundraiser that will help us close the gap. The Bear Tooth Theatrepub has graciously offered to host a benefit for Luke, and will donate all proceeds from ticket sales. We'll be showing PJ20, the "rockumentary" about one of Luke's favorite bands--Pearl Jam (which awesomely agreed to contribute its movie rights). It will be a fun event, and a chance for Luke's community to come together again. Please mark your calendars and plan to join us!

And one last thing--I've added a few recent photos of Luke, hanging out with the kids and working hard in therapy. Check them out!

- Sarah





02/11/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
TAKING CHARGE

Hi all. There's a lot to report, both wonderful and challenging. Kris says Luke is really waking up, and beginning to initiate conversations and ask questions. This is a good sign for his cognitive health and memory. He may have suffered post-traumatic amnesia--which is normal for such a significant head injury--but he seems to be remembering more now. He remembers "people and parties" during his time in the Anchorage hospital (no surprise there--there was often a soiree his room).  Luke asked for a way to indicate when he wants to talk, and since then he has been keeping Kris busy as they work together through the question and answer process. Luke has been asking about his accident, his time in the hospital, and about how Kris is doing. He has also been asking for his schedule, all of which is an indication that he is getting his "initiation" back.

Kris says they have heard Luke laugh a few times, which is wonderful news for anyone who had the pleasure of hearing it before the accident. The guy sure likes to laugh. and knows how to bring out laughter in others. He spelled out "Go Hawks" to a pro-Broncos therapist this week--yup, that's Luke. He was able to watch the entire Superbowl, which is pretty impressive and shows just how far he's come. In Anchorage, he wasn't able to watch much of a game at all.

Luke has been asking for a new glasses prescription, saying his vision is worse and he can't read lips or see sign language even with his glasses on. Apparently this is a common side-effect of a TBI. The team will arrange a thorough eye exam soon to get him a new prescription.  

One difficult piece of news is that Luke doesn't know where the left side of his body is in space. When his head is forward and centered looking at his reflection in a mirror, he will say his head is turned right. He has sensation on his skin, but he can't feel his left arm move. This is called left side inattention, and it is caused by a stroke in the right lobe. Hopefully, therapy can help him find the left side of his body again over time. If not, it will be more challenging for him to learn how to control his left side.

Fortunately, Luke is able to feel his right arm move. His therapy team tried his right arm in the "arm robot" which helps him catch raindrops in a cup, and the right arm did better than the left.

The team is continuing to look for a "switch" that will allow Luke greater control and independence (for example, to call a nurse when he needs something, initiate a conversation by means other than eye contact, and operate a computer or equipment). They tried a fiber optic switch that was triggered by his lip breaking the light beam, and software program operated by eye gaze. Both had some success but weren't quite right, so other options are being explored.

Luke has been very busy with all kinds of activities, and is usually out of his room for most of the day. He has begun manual therapy and trigger point release and stretching classes. He loves going to Kris's apartment after sessions, and is cleared for field trips as long as he's healthy. He missed two because he wasn't feeling well. It turned out to be a complication requiring minor surgery. It went well and Luke was soon out of bed and able to visit the apartment.

Kris is beginning to think about changes that might need to be made when they are back in Anchorage, but wants to wait because what Luke will need is still so uncertain. She was able to pay bills from Providence with donated funds--so thanks again to everyone for providing that financial support.

Although last week was a little tougher since Luke wasn't feeling well and needed surgery--and the left side inattention was discovered--there were so many positive gains cognitively. Here's my favorite line from Kris this week--"Seems like the take charge Luke is coming back." 
Luke's energy, drive and perseverance will serve him well in the months ahead, so this is very good news.

Thanks again to everyone for your ongoing love and support. It is greatly appreciated. Best wishes to you all.

-Sarah





02/02/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
A HOPEFUL BEGINNING IN REHABILITATION

Hello everyone. You will all be glad to hear that Luke is still making good 
progress in Denver. I spoke with Kris a few days ago and she seemed to be in great spirits. The support she has received from the medical team and new and old friends in Denver has been incredible.  Luke is receiving excellent care, and is showing signs that his brain and body are making new connections. This is encouraging because the rehabilitation part of his journey has really just begun. Kris is hopeful and optimistic about the future, and embracing a range of possible outcomes. Here is the latest update from Kris, mostly in her own words:

*****
Some cool news this week… We are seeing some movement in Luke's left hand, and Luke is reporting cold pain in his hand. They think this is related to his nerves reconnecting. He also squeezed his left shoulder blade on request, and the Occupational Therapist thinks she is seeing more left arm bicep and tricep than before. 

Luke is reporting double vision, and the eye gaze computer is picking up two eyes. He is asking for a new prescription for his glasses (The eye doctor says patient's eyes often "age" five years due to a TBI, and usually need a stronger prescription). Luke is trying out a patch over his weaker right eye, in the form of a square of tape over the right lens in his glasses. This should eliminate his double vision, but maintain his peripheral vision and allow his eye to strengthen. 

Luke no longer wears his neck brace at night. Hopefully he will be able to ditch the neck brace for good soon. He is sleeping better with the brace off, and seems more relaxed in bed.

Electrical stimulation worked on Luke's' right leg. We are hoping to get him on an e-stim bike soon. E-stim also worked on Luke's wrists and fingers. 

We have met to get some ideas about house modifications. The biggest things we will need are an ADA bathroom and an elevator.  Our idea is to put it the ADA bathroom in the garage. And an elevator might be better than a stair lift to give Luke access to the basement and our bedroom. 

We've been doing family activities through the hospital's therapeutic recreation department and Luke really seems to enjoy the chance to spend that time together. He got his off campus pass and can now visit our apartment. We took him for a visit and he didn't want to leave. I think he has been cleared for a field trip to the wildlife museum on Saturday morning with the recreation therapists. Family can go too, and Luke can ride in the hospital's van. Our fingers are crossed that he doesn't get carsick!

I don't know how long we will stay in Colorado, but I'd like to be home by August so the kids can start school. The current plan is to do two months or less as an inpatient, then a few months as an outpatient. Craig's outpatient program starts off at five days per week, then gradually goes to one day a week. I'm guessing we would go home somewhere around three days a week, depending what Luke wants, what Luke needs, and what he can get in Anchorage. Our insurance does pay for unlimited outpatient therapy as long as a doctor thinks it's necessary. 

*****

Kris also mentioned that Luke is getting much clearer in her communication with him. His blinks and gazes are easy to read and he has energy to communicate for a lot longer. When he was at St. Elias, Luke was tired a lot and couldn't tolerate more than a few white boards of conversation at the end of the day. Now, after a full day of therapy, Kris says she can go back and forth with him for an hour or more. 

As always, Kris is incredibly grateful for all the support she has received from friends and family far and wide. 

Here's to a great month in Denver

- Sarah





02/01/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

Thank you again to all who have donated.
We've been learning that some of the thank you emails we have sent have ended in up spam and junk folders.
If you did not receive a thank you email, please see below and know that your contributions are making a difference!

___________________________________________________________
THANK YOU!

More than $250,000
of our $300,000 goal has been raised! And more importantly, thanks to you...

Luke, Kris and their children are at Craig Hospital in Denver, Colorado, beginning intensive rehabilitation for Luke's traumatic brain injury. Your support helped to make this important step possible for Luke and his family. Already Luke and Kris are feeling the positive impact of being at a hospital that specializes in helping people with brain injuries, and being surrounded by a community that can help them adjust to the changes ahead.

This simply would not have happened without your generosity, and we cannot say it enough, but -

Thank you, from the bottom of our hearts.

- "Team Luke" on behalf of the Simpson Family






02/01/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

Thank you again to all who have donated.
We've been learning that some of the thank you emails we have sent have ended in up spam and junk folders.
If you did not receive a thank you email, please see below and know that your contributions are making a difference!

___________________________________________________________
THANK YOU!

More than $250,000
of our $300,000 goal has been raised! And more importantly, thanks to you...

Luke, Kris and their children are at Craig Hospital in Denver, Colorado, beginning intensive rehabilitation for Luke's traumatic brain injury. Your support helped to make this important step possible for Luke and his family. Already Luke and Kris are feeling the positive impact of being at a hospital that specializes in helping people with brain injuries, and being surrounded by a community that can help them adjust to the changes ahead.

This simply would not have happened without your generosity, and we cannot say it enough, but -

Thank you, from the bottom of our hearts.

- "Team Luke" on behalf of the Simpson Family






01/28/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
More great news to share from this past week.  Kris is doing an amazing job keeping us up to date on all the wonderful things happening in Denver.  
 
First of all, Luke's trach is out and the wound has already begun to heal. Secondly, Luke's wrist is fully healed and the splint was removed. 
 
Luke did two cool tech labs this week. First was adaptive technology (he got to do this one twice), which involved working on a computer and selected stuff with his eye gaze. He played a game selecting matching cards.  The plan is to practice in the lab to determine which system works best for Luke, and eventually to borrow that system to use in his room. They are also trying to find a switch he can use to call nursing. Leading candidate is a twitch switch adhered to his forehead, that would allow him to call nursing by moving his eyebrow. 
 
The second lab was an upper extremity lab. The therapists strapped his left arm into a mechanical exo-skeleton which was then wired to a computer. The computer could tell when Luke was moving, and it would help him move too if needed. He played a computer game where he moved his arm right and left to catch raindrops in a teacup. When Luke moved his arm, the cup was white. When the computer helped, the cup was red. At one point, Luke moved all by himself to catch the raindrop. The rest of the time the computer did some of the work and the teacup on the screen would alternate between white and red depending on how much Luke or the computer were working. In the first game Luke did about 18% of the work, but in the second round he did about 21%. Luke will do this exercise several times a week, and the hope is that over time Luke will move more and the computer will help less. 
 
Luke's left leg responded well to electro stimulation. His right leg still needs to be checked; If the right also responds, there is an e-stim bike that he can use that would fire his muscles to pedal the bike. 
 
Kris and Patty have been seeing some movement on Luke's right side lately, similar to what they saw on the left when Luke first started moving his left side. At physical therapy on Friday Luke was in a standing frame, and his PT confirmed that he was activating his right leg. 
 
After even more tests, Luke's doctors still don't know why Luke can't hear. They say they haven't seen this before. There isn't anything on his brain scans that would indicate hearing loss but the tests he had last Monday found that sound wasn't getting into the auditory nerves. They are going to repeat these tests in a couple of weeks in a more sophisticated way.  Kris is being told that it is still a possibility that his hearing will just come back.
 
Kris, Patty and Kris' parents had a family meeting on Friday with the Craig staff. Kris learned that  Luke's brain stem stroke was partial- which means he does have some functioning brain stem left, and that gives lots of hope for regaining more function. 
They also started to discuss next steps for Luke.  Luke is wrapping up his "hospital" portion of his time at Craig and is about to start his intensive rehab portion.  The rehab should last for another 8 weeks or so, after which the recommendation is that he continue outpatient rehab at Craig too.  The discussion at the family meeting was that Luke would have the best access to adaptive communication and rehab equipment at Craig (agreed!!) and it would also give the staff more time to train Kris on how Luke uses his therapy equipment.  They are also looking in to purchasing some of the most useful piece of equipment for home use (such as an e-stim/bike combo that would fire his muscles to make him pedal, or a standing frame that can also double as a lift). Kris has labs (appointments) next week to discuss mini van and house modifications.
 
As I said before, Kris sounds wonderful and so settled when I have spoken with her on the phone.  It really reinforces that Luke is in the right place.  I'm going to let Kris speak for herself on this next part because it is wonderful to hear how she and the kids are getting on:
 
"We are actually holding up pretty well. The anxiety I had in AK is almost gone- I am eating and sleeping again. It's nice to see Luke and kids so much, and be able to pop back and forth. Kate is enjoying preschool two mornings a week, and Will loves school with grandpa. They spend so much time with family that I think they feel surrounded by love. They do miss their AK friends though. They are also playing video games and eating too much sugar. Oh well. We are finding more ways to incorporate Luke into family time- the therapeutic recreation department has lots of things we can do if Luke is there too like movies, tie dyeing, clay sculpture, foozball, air hockey, etc. We have been bringing Luke outside with us, and he watched Kate & I play Jenga and put together a puzzle yesterday. I'm finding some time to take walks and go to parks with the kids too. Hopefully Luke will get an off campus pass soon; then we can bring him to our apartment and maybe take him on a walk with us. T-rec even does field trips to places like the aquarium and zoo and bowling when Luke is ready. 
 
We have met some wonderful people here in Denver. Colorado friends new and old are stepping up to make us feel right at home. 
 
Thanks so much for all the love and support you've been sending our way!"
Kris

Kris wanted to send a special thank you to the wonderful people at Kate's preschool in Colorado who have extended helping hands and shown amazing generosity. Just a few short weeks ago they were strangers, and today they are part of this incredible community of people who have stepped up to help and support Kris, Luke and the kids during this journey.
 
We again thank all of you who have helped to make this happen. Luke is in the right place because of you!

~ Ann





01/21/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
Lots to report!  Luke, Kris and the kids are settling in to the new routine at Craig nicely. It has been wonderful to check in with Kris and hear the excitement in her voice that Luke's needs are not only being met but he is being encouraged to go beyond what was expected.  Most of what has been done so far is testing and evaluation to establish Luke's baseline.  Although he is getting some rehabilitative services, he hasn't even begun the intense rehab portion of his stay.  Again, here is a summation of Kris's updates over the past week.
 
One of the more exciting pieces of news is that Luke's team believes that he is cognitively "clear" enough to begin being outfitted with a communication device. Luke is scheduled for technology lab this week and his team hopes to find an eye gaze communication method that he can use. They seem excited that he is ready for this so soon. Originally Kris was told this would take a month at least, probably more.

 Luke has also completed his 3 day trach capping trial, and did great. A doctor visit is scheduled for Tuesday to check him out and clear him for trach removal! I know this will have a huge impact on Luke psychologically and physically.  
 
Luke's second hearing test showed that his tempanic membranes are intact (eardrums), but stapedial reflexes were absent in both ears. Lots of reasons for that, but two reasons can be damage to brain stem and damage to auditory nerves. It is possible that his loss is due to swelling and may improve over time. More hearing tests will be completed to better understand what is going on. 
 
PT/OT initiated electro stimulation this past week to help him activate and rebuild neural connections. Luke is responding well to this electro stimulation therapy. The therapists have tried both biceps/triceps, and left wrist/fingers and all have responded. (They did not test his right wrist because it is still immobilized). What this means is that the nerves are healthy and able to respond; and hopefully the stimulation will facilitate new connections. The therapists were going to try Luke's legs this weekend.   Craig has put in a request with Luke's  insurance company to buy him an electro stimulation machine.  For e-stim to be effective (no guarantees) it needs to be done three times a day.  The plan is to train Kris how do do it and she will help maintain the schedule. 
 
Additionally, the Speech therapist has determined that Luke can read smaller fonts than we have been writing to him. This is wonderful for Kris, and for Luke, because now she can write him much more detailed messages.  Please feel free to send your short notes to Luke (written legibly); It means a lot to him to feel the support.

Luke's eye doctor has adhered a temporary weight to his right eyelid. It seems to be working well- allowing him to close his eye to blink and sleep, and he has no problems opening his eye either. Luke says he likes it, and his eye is feeling better. If it continues to go well, the plan is to put gold weights into his eyelid.
 
MRI results said that Luke's neck is almost healed, and they expect him to wear neck collar for only another month. (Yay!)
 
Kris and Luke spent some time with Luke's neuropsychologist on Friday discussing the accident and his injuries.  Luke said he remembered the day of the accident, and that he was biking at Kincaid, but he didn't remember anything about the accident itself. He also said that he was interested in hearing more about what had happened. Kris and his doctor told him where & how he fell, and they discussed the nature of his injuries. Kris was relieved to have someone not emotionally involved to help her share the specific details.  Luke's dr did a great job helping Luke to direct the questions and he checked in frequently to see when he wanted more info or had enough. Although Kris was wary of this conversation, she feels so relieved now to be really talking about it with Luke in more detail.
 
Last but not least Kris and the kids are excited to start sharing activities with Luke.  Recreation therapy at Craig sounds amazing. The whole family can go in the pool and the kids can participate in all activities and games as long as Luke is there (tie dyeing, ping pong, air hockey, field trips (when ready), clay ceramics, gardening, movie nights, pet therapy, etc. They also have Craig graduate trips like sea kayaking and camping for later.

Kris is thankful for the outpouring of support they have already received in Colorado and the wonderful messages and check ins from everyone.  
"Thank you for all your help, support, and positive vibes!"

As for fundraising, you all have blown us away with the outpouring of support for Luke, Kris and family! We thank you. Truly amazing what has been raised so far in such a short amount of time.
We know that the first 8 days of Luke's stay have been covered through his hospital benefits and after that his rehab benefits will kick in.  After 30 days, all costs will be out of pocket expenses to the tune of about $3000/day. Your donations will have a huge impact.  Thank you!

~Ann





01/16/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
Frosty Bottom Report
 
The Anchorage biking community turned out en masse on January 4th to support Luke's recovery by competing in the Frosty Bottom Snow Bike Race.  A record field of almost 300 riders made this one of the biggest snow bike races in the country.  When the final tally came in, $11,600 had been raised to support Luke, Kris and the kids as they continue on their journey.  A huge thank you to Bill Fleming and Jamie Stull of Chain Reaction Cycles for organizing this event and agreeing to donate all the proceeds to Luke.  Kudos also to race timer Kristin Wilkinson who donated her fee ($500) to Luke's recovery fund.
 
At the award ceremony Bill Fleming eloquently reminded us all how lucky we are to be part of such a dynamic biking community.  Anchorage is ground zero for the snow biking revolution that is sweeping the country.  Luke was an early adopter of fat tire technology and has been active in the winter biking scene for many years.  His love of the sport makes the support and financial backing of the Alaska snow biking community all the more meaningful to Luke and his family.
 
A final thank you to all the Team Luke supporters who rallied to staff the 25 mile finish/aid station on short notice.  Volunteers braved the cold for over 4 hours to cheer on an support all of the racers.  Kris, Will and Kate were able to share in the triumphs of the racers while taking a break from their daily hospital routine.  Laughter, tears and smiles were the order of the day as we all celebrated one of Luke's true passions.

- Tim
 





01/12/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

THE FIRST WEEK AT CRAIG

Overall, Luke’s first week at Craig seems to have gone well. Here is an amalgamation of the reports we’ve gotten from Kris since her arrival on Tuesday: 

The family is settling in, and enjoying the relatively warm weather and sunshine. After a few days with a roommate, Luke was moved into a private room. Kris says: “Yay! I suspect that was due to two noisy kids and more visitors than typical.” I love hearing that even in Colorado, Luke is surprising people with his giant fan club. We really appreciate the friends there who have stepped in to take over the supporting role of Team Luke. 

The team at Craig Hospital has been working hard to learn about Luke’s injuries and how they are impacting him. They are repeating tests to get their own baseline, and doing new tests as well. 

Luke’s eye doctor reported that Luke can't see out of his right eye (which was not really a surprise). He did say his optical nerve looks good, and it's possible something could be done to improve his vision in his right eye. 

Luke had a basic hearing test, and didn't hear any of the tones. But several visitors have reported that Luke seems to be able to hear at times, and Luke himself once said that he could hear a little. More hearing tests will be done to try to establish exactly what the impairment is. 

As I mentioned in a previous post, Craig refit Luke’s neck brace. It had been bothering his ear, and was also necessary because he has lost significant weight since the accident. The team eliminated his big back brace altogether, saying he no longer needs it. They also fitted Luke for a wheelchair, and within a few days of arrival he was sitting in the sun looking out the windows.

Luke had a vomiting spell during his flight and after he arrived. They considered scoping his stomach but decided against it because his neck is not  yet stable enough. His team decided to treat him for an ulcer, start his tube feeding back up again, and hope for the best. So far he seems to be doing ok, but if the problem recurs they may scope him next month when his neck is more stable.

Luke has been cleared to use his speech valve again, and the team gave him a cuff-less trach. This means there is not a balloon inflated in his throat when his speech valve is not in use. Also, this is the smallest and last trach he will have, and Luke is well on his way toward weaning off the trach. Removing the trach is an important step toward improving Luke’s quality of life and reducing the risk of serious infection. 

On Friday, Luke did well in physical therapy. His physical therapist sat him up  on a mat and leaned him over on his forearm. Luke was able to activate his left side to try to keep his balance, and to try to catch himself when he lost his balance. 

Kris has spent a good amount of time talking to Luke's neuropsychologist about Luke’s injuries.  The neuropsychologist said he has never seen a patient with three occluded arteries before. He explained that Luke has two main issues; the primary one is the brain stem stroke, but there was also a smaller stroke in Luke’s right lobe. 

The right lobe stroke is likely the cause of Luke’s weakness on his left side. It is hard to tell what the other effects of the right lobe stroke are, because these effects are probably masked by the effects of the brain stem stroke. The neuropsychologist said to expect a lot of improvement in the first nine months with regard to the injuries caused by the right lobe stroke. Improvement will continue for at least two years.

Luke’s brain stem stroke caused damage to the two arteries in the back of his head. It is likely the cause of Luke’s speech loss and his right side paralysis. 

The neuropsychologist indicated that the brain stem stroke is more mysterious, and is harder to predict than the right lobe stroke.  We just have to wait to see what Luke is able to do over time. 

The neuropsychologist told Kris Luke was well taken care of in Anchorage. We thank the team at the Providence ICU and at St. Elias for all they did for Luke in first two months after his accident. 

Luke’s insurance company has approved the first week at Craig as if he were in the hospital and not a rehabilitation facility. This should reduce Kris and Luke’s total out-of-pocket bill by one week.  They will try to get this approval for a second week as well. 

We know Luke is on all of your minds and we’ll do our best to update you as soon as more information comes in. Here is a closing note, direct from Kris: “Thanks for your love, support, and encouraging words! We appreciate it.”

- Sarah






01/07/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
GETTING ADJUSTED

After a smooth flight in a tightly-spaced plane, Luke is all settled in at Craig's hospital. So far the reports coming in have all been upbeat and positive. Kris is very impressed with the facility. This morning she texted, "I love this place already and I haven't even seen Luke yet." 


Luke is on a floor of TBI patients, mostly around his age and in wheelchairs. Kris's apartment is spacious and comfortable, and is only a short walk through a skybridge to Luke's floor. There are a lot of other athletes at Craig and it will probably be helpful for Kris and Luke to meet some of the patients and families with shared experiences. 

The team at Craig is working hard to establish a baseline with Luke. They welcomed him with a number of tests and assessments. They also took some time right off the bat to adjust his neck brace, which had been bothering him off and on for a while. I know that attention to detail will be very much appreciated as Luke's family works to achieve the best possible outcome and quality of life for him.

Kris reports that Luke is also happy with the environment and care at Craig and has a positive outlook about the road ahead. It must be a relief for him to know he is in one of the best TBI rehab facilities in the world. Apparently they will keep him very busy there, and he will spend much of the day outside of his room. He'll be engaged in intensive therapy 3-6 hours a day right from the beginning. Although this will probably be exhausting for Luke, I have no doubt it will do a lot for his spirits just to be active and working again. 

We'll write a more detailed update at the end of the week when Kris has more information about the outcome of the assessments and Luke's activity in therapy. For now, Kris wanted to ease everyone's mind with a quick "thumbs up." 

Thanks again to all who have sent their words of support, and those who have contributed to make Luke's journey to Craig possible.

- Sarah





01/05/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
COUNTING DOWN...

It's a busy time around here--everyone is bustling around trying to help Kris, Luke, and the kids get ready for their trip. Luke is scheduled to fly out of Anchorage in just 15 hours!

While in Colorado, Luke and Kris's mailing address will be:

Luke Simpson
3425 S. Clarkson St. 
Englewood, CO 80110

Please make sure Luke's name is on any mail you send.

If anyone is thinking of visiting Kris and Luke in Denver, the Craig Hospital uses Marriott Town Place Suites and has a discounted rate.  The hotel phone number is 1/800/257-3000. Please mention Craig Hospital when making your reservations. The rate is approximately $74.00 per night. 

Thanks again to everyone who helped make this journey possible. There is a positive, hopeful feeling around here today. We are all looking forward to seeing what the next three months will bring.  Whatever it is, knowing Kris and Luke have all the love of such a wonderful, supportive community has been a huge comfort to everyone.  

- Sarah





01/04/2014
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

ITS A GO!!

Somehow, at the last minute, everything came together and it's official: Not only is Luke leaving on Monday for Craig but the insurance company has agreed to cover the MedEvac expense! Huge kudos to Kris for making sure everything was set up and signed with the MedEvac company. Also a big thank you to everyone who helped get the appeals properly written and in to the insurance company in a timely manner. This is an amazing network of friends and family: everyone keeps stepping up to support Luke and help Kris shoulder the weight in all aspects of this journey.

Luke will fly down Monday morning with his mom and Kris and the kids will follow later in the day on a commercial flight. One thing that is wonderful about the Craig is that it requires significant involvement and commitment by the family; and the facility provides an on-site apartment for Kris and the kids to stay while Luke is being treated.

Kris is looking forward to this next step for Luke and her family. Even though Craig is not necessarily a magic wand that will grant compete recovery for Luke, their innovative program gives him his best shot, a fighting chance to forge a life that he will be happy with. And none of this would be possible without the generosity of everyone who has supported Luke and Kris through your donations. All of you who have been there for Luke, for Kris, and have donated your money... You are giving Luke this chance. There are no words to fully express the gratitude and appreciation. Kris is awed by this outpouring of support. THANK YOU!!

With a $100,000 check written to Craig today (a portion of the $180,000 total expected out of pocket costs for Luke's care) Kris has already made a significant withdrawal from your donations.

And Luke keeps showing us more of what he is capable of: now that he has illustrated that he has voluntary movement of his left leg and foot, the therapists have been working with him to be able to operate a button. By moving his leg up and down, Luke has been able to push a button with his foot. This will come in handy in multiple ways: to signal or notify someone if he needs something, to help answer questions, operate a modified keyboard or hopefully even help him control a powered device like a wheelchair.

Tomorrow is the Frosty Bottom snow bike race which is being dedicated to Luke - all proceeds and online donations will go to support Luke's care. It sounds like there will be record numbers in attendance. If you are free and want to show your support for Luke by volunteering your time, please come to the turnaround location at the entrance of the Hilltop parking lot from~11 to 1. It may be challenging to park so carpooling is encouraged.

Again, thanks to all of you- this amazingly warm and generous community, for giving Luke the opportunity to improve at Craig Hospital. You are amazing!

I will be checking in with Kris frequently so we can update you all during Luke's rehab.

Signing the Caring Bridge or YouCaring Guestbook will be a great way to stay in touch and share words of encouragement during Luke's time at Craig.

~ Ann






12/27/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
GOOD NEWS

Here's a bit of much needed good news for Luke Fans:


Today, Luke moved his left leg, foot, and toes repeatedly on request. And he did all this during his assessment by the evaluator from Craig Hospital! It couldn't have been better timing, or more welcome news.  

The therapy team was working with Luke to show the Craig evaluator Luke's abilities and limitations. When Luke was asked to move his left leg, feet, and toes, to everyone's surprise, he did so. He was asked to repeat the exercise several times with success, and his movements were clearly voluntary. This was the first time since Luke was in the ICU that he has been able to demonstrate control over any motor function other than his facial muscles (Luke is able to move his lips and mouth, and is excellent at puckering up for a kiss from Kris). 

Luke's achievement today is also a reminder that he is only beginning on his path to recovery, and we have to be patient to see what he can do. Only a few weeks ago, Luke couldn't feel his left leg at all. Now he is beginning to re-establish control over it. If Luke can do that, it opens up whole new possibilities for him. Something as simple as controlling a foot means that he can operate equipment that will help him live more independently.

We have great hope that Craig Hospital will be able to optimize the first stage of his recovery and help Luke regain as much motor function as he is capable of. At the same time, the evaluator reminded Kris that there are limitations to what they can do for Luke, and that much of his time there will be spent learning how to function with limitations, and teaching his family how to care for him. It does not mean that we have given up hope that Luke will recover motor function, it means that we have adjusted our expectations to accommodate the entire spectrum of possible outcomes. 

The Craig evaluation went very well, and the evaluator indicated there is a high likelihood that he will be admitted. If all goes as planned, the paperwork will be sent to Luke's insurance company on Monday for approval. Luke's estimated admission date is still January 6th. That is not far away, and there are a lot of details to take care of between now and then. As expected, the insurance company has denied coverage for the medevac transport. We are working on an appeal, but are relieved and grateful to know that Kris will be able to write a check to cover the cost no matter what happens. The same is true for the initial $100,000 deposit she is required to make to Craig. We are continuing our fundraising efforts to make sure she is able to cover the remaining $80,000, any additional time he may need there if he shows significant progress, and any adaptive equipment or short-term care he needs when he returns.

Again, a sincere THANK YOU to all those who have contributed to Luke's fund. You brought us closer to our goal of raising $300,000 and made a direct impact on Luke's recovery and future quality of life. And to the entire community of Luke Fans, thanks for continuing to offer support and positive words of encouragement.

- Sarah





12/26/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

FUNDRAISING GOAL RAISED TO $300,000

Due to recent events and information, we are increasing the fundraising goal to $300,000.

Our initial fundraising effort was a huge success. We set a goal of $75,000 and raised over $130,000 in less than two weeks (this amount includes offline donations that have not yet been included in the online total because some donor information is still missing). 

Despite this success, we cannot rest. 

On Friday, December 27, Luke will be examined by a representative from the Craig Rehabilitation Hospital to make the final determination about his candidacy for treatment at their facility in Denver. It is likely that Luke will be admitted.  The out-of-pocket costs, just for this phase of treatment, will be enormous:

  • Luke's planned stay at Craig will be 90 days with the first 30 days covered by insurance.
  • The remaining 60 days will cost $180,000, and based on initial information from the insurance company, will be out-of-pocket. 
  • Craig requires that Kris make a $100,000 deposit prior to admittance.
  • The remaining $80,000 will be due soon.
  • If accepted Luke will depart for Craig on January 6 via medevac at a cost of approximately $27,000.
Fortunately, because of your contribution, and the contribution of over 300 other concerned individuals and businesses, Kris will be able to write a check to Craig for the $100,000 deposit. She will also be able to negotiate a medevac flight with the amount we have raised.
But Craig will require an additional $80,000 soon, and we are still waiting the final out-of-pocket costs from Providence and St. Elias Hospitals.
So we can't stop now. 
With many costs still unknown, and the expectation that future treatment and care will require significant out-of-pocket expenses, the need will only grow. Therefore, the fundraising team has pledged to raise $300,000 for Luke's treatment and long-term recovery.  
We thank you for your continued support of this important cause. Please know that your support is deeply appreciated by Luke's family. You have all given Luke and Kris new hope when it was desperately needed--without you, it would not have been possible for Luke to go to Craig Hos. 
Please look for announcements about additional ways to support Luke and his family through some really great events in the coming weeks and months.

- Sarah





12/23/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
COMMUNICATING WITH LUKE

In the last two weeks we have learned a lot about how to communicate with Luke. We wanted to share some tips for those friends and fami who are able to get in to visit him. 
As you know, right now Luke cannot hear and can communicate only with his eyes. Therefore, messages are relayed to him in writing and he responds by moving his eyes up and down or blinking. 
If you have a message for Luke, please use the whiteboard that is in his room. Orient the whiteboard vertically, and write in short sentences. (Luke does not have much lateral eye movement so it is difficult for him to scan very far to the left or right.) 
Feel free to tell Luke news from your day, or just let him know he is in your thoughts. 
If you have a question for Luke, the simplest way to ask is in yes/no form. He looks up for yes (or to acknowledge that he understands), and he looks down for no. 
But Luke is also getting good at using a “letterboard” to communicate more complex thoughts. He is doing well cognitively and many of his answers in the last week have shown that. He seems to be well oriented to place and time, and to remember the details of his life before the accident. 
You’ll notice a laminated sheet of paper in the room with all the letters of the alphabet, written in rows. Write your question on the whiteboard--for example, “How do you feel today?” Then show him the letterboard and very slowly point to each letter. Luke will blink deliberately when you get to the correct one (sometimes he anticipates and blinks a little early. Also, it takes a little time to distinguish his very brief, reflexive blink from his slower, deliberate blink). If you notice Luke looking down, he is probably telling you to start further down the alphabet. For example, if he wants to spell “TIRED,” he will look down until you point to the row of letters with a “T” in it. 
Luke sometimes becomes physically uncomfortable and will ask his visitors for help with his voice or facial expression. If he seems to be doing that, here are some questions you can ask him to try to figure out what he needs:
“Need body to be moved?”
“Need head to be moved?”
“Too hot?”
“Too cold?”
If you can’t figure it out, but he seems to be in discomfort, just ask someone at the nurse’s station to come in and check him out. 
There is a “Communication Binder”’ that has other tools for communicating with Luke. If you can’t find the letterboard it might be in there, and there is also a chart with “prompt” questions or statements that can be useful when talking to Luke (for example, “I feel _______”, “I want _______”).
Luke seems to have caught a cold and has not been feeling that well for the past few days. He also gets tired easily, in general. Being the social guy he is, he might try to stay awake when he has a visitor, even if he is really tired. If Luke is tired or not feeling well when you visit, it can be difficult for him to communicate. You may have a hard time interpreting his eye movements. If you notice this, it is still helpful just to be in the room with him while you read or do work. If you let him know you’ll be there for a while, he’ll usually close his eyes and rest. For example, I will often write something like, “I will be here for one hour. You rest.” 
Thanks to everyone who has been able to get in to visit Luke. We are still using shifts on the CaringBridge “Planner” (http://www.caringbridge.org/visit/lukesimpson), so feel free to sign up for one if you have spare time (you don’t have to come on time or stay until the end--the goal is just to make sure people are checking in on Luke during the times his family is not there).  And as always, please feel free to drop in anytime, whether you are signed up for a shift or not. 

- Sarah





12/22/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
ELIMINATING THE FUNDRAISING GOAL


Thank you so much to all who have supported Luke's recovery by donating to his medical expense fund.  Because of the overwhelming response to this fundraiser we reached our goal of raising $75,000 in just nine days. We are deeply grateful for every single donation, no matter the size, as well as the encouraging thoughts, hopes and prayers of each of you.

Since beginning this fundraiser, we have learned a little more about the future expenses that Kris and Luke might incur. We believe there is a significant likelihood the Simpson family will need a great deal more than we have raised. This belief is based on the information we have gathered from experts in the medical field and the Simpsons' insurance company.

Based on this new understanding and on the overwhelming response of the community, we have decided to eliminate a specific fundraising goal for the time being. We will continue to raise funds as long as there are people who would like to contribute to Luke and his family. When we have more precise information about the long-term costs associated with Luke's injury, we will likely establish a new goal based on that information.  

For now, here is a summary of what we know, as well as what we don’t know:

What we know

  • Luke's cognitive function is good. 
  • Luke's motor function has improved only incrementally and remains a cause for concern.
  • Luke is a candidate for residence at the Craig Hospital in Denver, an excellent facility that is world-renowned for its specialization in traumatic brain injuries.
  • Luke will benefit from rehabilitation at Craig because they offer expertise in exactly Luke's type of injury, as well as specialized technology to stimulate motor function and facilitate communication. 
  • A medevac to Denver will cost $40,000 or more. Luke’s insurance company has initially indicated this cost will not be covered and we are exploring options for payment.
  • If admitted to Craig, Luke is likely to stay at Craig for 90 days. Depending on his progress, he may be eligible to stay longer. Luke's insurance benefits will cover 30 days of his stay. Craig Hospital costs $3,000 a day, or $180,000 for 60 days.  There may be room for negotiation, but that is uncertain at this time. 
  • The Simpson family has incurred significant, but still undetermined, out-of-pocket expenses for Luke's initial hospital stay at the Providence ICU.

What we don't know

  • How long Luke and family will stay in Denver, but it will be at least 90 days.
  • What the out-of-pocket expenses associated with his care at the Craig Hospital will be.
  • What type of adaptive medical equipment Luke will require (for example, a wheelchair, wheelchair accessible van, and communication technology), and whether any of that equipment will be covered by insurance.
  • To what extent the family home will need to be renovated to accommodate Luke's injuries.
  • What level of care Luke will need long-term, and to what extent this care will be out-of-pocket. We are still very hopeful that Luke will regain some degree of independence, but there is a possibility that he will not recover motor function.  

Despite all the unknowns, Luke continues to work hard to recover and needs our support. Please consider donating to this cause if you haven't yet had a chance.  

If you have made a contribution, thank you so much. We truly believe the funds we are raising right now will have a direct ability on Luke's long-term quality of life. Collectively, we are giving him the best possible chance to recover motor function, as well as the ability to communicate with others. We are so grateful for the people who are supporting these important goals. We would appreciate your help getting the word out to others who may be interested in helping Luke, Kris and their children.

- Sarah






12/17/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

LEARNING ABOUT REHABILITATION

Our last update was a real high point on this journey. Discovering a way to communicate with Luke was an enormous achievement and relief. In the week since, Luke, Kris, and the team of therapists have continued to build on that achievement and make progress. On the other hand, we have also been reminded what a roller coaster this whole experience has been, and will continue to be.

Last week Luke's physician, Dr. Lester, sent in referrals to several TBI treatment centers around the country including ones in Seattle, Chicago, San Jose and Denver (the Craig Hospital that Ann mentioned in her last update). Unfortunately, two of those, Seattle and San Jose, were unable to accept Luke at this time. Despite all of the gains that Luke has made, these two centers require that patients have a greater level of voluntary movement than what Luke has.

Although this news was disappointing, the Chicago hospital and Craig are still options for Luke. Craig will send its own evaluator up to assess Luke and to meet with family and medical staff, sometime after the holidays. If Luke is accepted, it probably will be into their low level rehabilitation program, due to his lack of mobility.

Today we are still very hopeful that Luke will be accepted to Craig. But it is still unknown what that rehabilitation would look like for him. If Luke does not begin deliberately moving parts of his body, the rehabilitation program will be more about learning to use adaptive technology such as a wheelchair and communication devices, and teaching Luke's family how to care for him. This is called "low level rehab." It is possible that Luke will not progress beyond this point and will return home quite dependent and requiring significant care.

We are still hopeful that Luke will begin regaining some motor function and will eventually advance to a higher level of rehabilitation. Luke is showing many positive signs that he is healing. He has told his therapists that he can feel now feel his left leg and told Kris that he could feel her hand on his right cheek. Previously, he could not feel the left side of his body or the right side of his face. He has also begun smiling, and may be moving his head deliberately.

Cognitively, Luke is doing very well. He is oriented to time and place, knows his friends and family, and can remember conversations from prior days. He is getting very good at using the letterboard to express himself beyond answering yes or no questions, and was able to tell the therapists what he wants to give his children for Christmas.

This past week Luke's brother Alan & his family, and Luke's longtime friend Josh & his family, flew up to visit with Luke and Kris. Their visit was a welcome reminder of all the love and support that are backing Luke and Kris now. This is also evident in our fundraising success--over $60,000 raised in a week. To everyone who has shown their support, thank you. Your encouraging words, thoughts, and prayers mean so much.

- Sarah






12/12/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

A HOPEFUL START

We on Team Luke are all so touched. We have been calling, texting, and e-mailing each other in amazement for the last two days--we have raised almost $28,000 in just 48 hours! This is a testament not only to the wonderful person Luke is, but also to the beautiful world we live in. Many of the donors are Luke's friends and family, but many are also people who do not know Luke at all.

To each and every one of you--thank you so much for your generous contribution. Every little bit helps get Luke closer and closer to his goal of receiving rehabilitation at a specialized TBI hospital. I know Luke's wife Kris is very moved by the outpouring of support, and relieved that she does not have to bear this burden alone. Right now, I feel proud of our entire community--which is now made up not only of Luke's loved ones but also people who simply want to help another human being. 

I want to share a story that shows Luke's strength and character, and why we all have so much hope that he can break free from his brain injury. For weeks we have watched Luke endure unimaginable suffering and have had no way to communicate with him to know how he was feeling. Since we discovered that his hearing is impaired, we have learned a little more every day about what is going on inside him. His therapy team has begun using a letterboard to help Luke communicate words by signaling letters with his eyes. Yesterday, his longtime best friend flew up to Alaska to see him. Josh visited with Luke during therapy, during which Luke was able to spell out Josh's name. Then, when prompted to finish the sentence, "I want to tell Kris_____," Luke signaled, "I OK."

This was one of Luke's very first chances to communicate with his wife, and being the person he is, he took the opportunity to reassure her. He did not say, "I can't do this," or "I'm hopeless." He said he is OK. And though we know in truth that Luke is far from OK, those three little letters signaled to us that Luke has hope and is ready for this test of endurance.

Thank you again to everyone who has contributed so far. Your gift means far more to Luke and his family than just a dollar amount. It represents needed support and encouragement during an extremely challenging time. 

Best wishes, 

Sarah






12/10/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)
AN APPLICATION TO A TBI SPECIALITY HOSPITAL HAS BEEN SUBMITTED

Today, Luke's therapeutic team finished their assessment -  Luke has worked incredibly hard to demonstrate what he is capable of.  As a result,  Luke's managing physician (Dr Lester) deemed him healthy and responsive enough to be referred to Craig Hospital in Denver Colorado! Craig Hospital is a world-renowned rehabilitation hospital that exclusively specializes in the neuro-rehabilitation and research of patients with spinal cord injury (SCI) and traumatic brain injury (TBI).
http://www.craighospital.org/Primary-Nav/About/Overview/

Although Luke still needs to be assessed and accepted into the program, Dr Lester feels that he is a very strong candidate for several reasons: he shows strong cognitive function, despite slower gains in physical function, he shows good and consistent progress, and most importantly, Dr Lester said that Luke has the most supportive and high functioning family and friends that he has EVER seen. He noted this in the referral. Craig requires family to travel to the hospital to be with their loved one for the duration of their therapy. They want to help ensure that their patients have a strong foundation of support in place for when they return home. There is no doubt that Luke's network is strong and vast and that we will be there for him as he recovers from his injuries. According to Dr Lester, this makes Luke an exemplary candidate.

So we rejoice today! And we hope and pray that Luke will get accepted. The timeline is somewhat fuzzy due to the Holidays but It is possible, if accepted, that Luke may be moving in as little as 3 weeks. Please stay tuned for our first fundraising effort to help cover the significant Medevac expense in order to move Luke from Anchorage to Denver. We should be ready to go live in the next day or so.

Luke has shown such amazing progress in the past several days- now that we have finally settled on the right way to communicate with him. He is reading statements and answering questions consistently. Yesterday his therapists introduced a "letter board" to allow Luke to spell out his own words or sentences. The therapist goes through the letters and Luke gives her a "yes" for the letters he wants to use. This is a painfully slow process, and must be somewhat frustrating for Luke, but it is the first time that he has been able to communicate in words other than yes or no. To help him, the therapists give him a starting sentence such as "I feel______" to which Luke answered "tired" and then "I want to _______" to which Luke answered "go to bed". After a long day in therapy that seemed reasonable! 

Kris is overjoyed and so ready to take this next step with Luke. Please feel free to share your words of encouragement with Luke. We need to help him understand how far he has come to give him that moral boost to send him off. Craig will be challenging; he will be getting therapy for about 6-8 hours/day--- But Luke has the strength and the support to succeed.

- Ann





12/10/2013
by Team Luke Simpson (Andrew, Ann, Cindy, Ellen, Josh, Regan, Sarah, Tim, and others)

SIGNS OF PROGRESS GIVE HOPE THAT LUKE CAN HEAL

Luke Simpson is one heck of a guy. In the days after his mountain biking accident, more than 100 visitors must have gathered at the hospital to be with Luke, and each other. The receptionist in the ICU asked one of Luke's friends, "Who IS Luke Simpson?" Neither she nor Luke's medical team had ever seen so many visitors for a patient. But Luke's friends and family were not surprised by the turnout. Luke is the kind of guy who brings good things to your life. He is smart, funny, kind, generous, and adventurous. He takes care of his family, and his friends. Those who know Luke would do anything to give something back to him.

Luke's first week in the ICU after his mountain biking accident was a roller coaster. His friends and family were initially told he would recover, then that he would not survive, then that if he did survive he might not regain consciousness or any motor function. But Luke's family saw that when he was awake, he was aware. They knew that although he could not move, he could see, hear and feel them and they did not give up hope that he could build on this. They decided to give this extremely strong, hard working, and beloved person time to show what he is capable of.

After undergoing a tracheotomy and getting a feeding tube, Luke was moved from the ICU to a long-term acute care hospital in Anchorage. The move was stressful for him and he was mostly without consciousness for a couple of days. Then, Luke started to have periods of alertness. His medical team took advantage of these times and began physical, occupational, and speech therapy sessions. One of the purposes of these sessions is to help Luke form new connections in his brain so he can relearn how to accomplish basic functions like sitting, grasping, turning his head, and speaking. Although the road to recovery will be long, hard, and steep, it is possible for Luke to recover significant physical ability.

Luke has responded well to the early efforts at rehabilitation. Since his accident he has shown improved consciousness and responsiveness, reflexive swallowing, occasional movement in his fingers, hands, head, legs, and torso, and he has started using his vocal cords again. Each movement, no matter how small, is a significant achievement for Luke and shows his tremendous determination and strength.

And Luke now has a much better shot at building on these achievements because his medical team now has an accurate understanding of where he is cognitively. Until very recently, Luke was still considered to be in a semi-conscious state, and not yet ready to begin the really hard work. Then his therapists made an amazing discovery—he is more conscious than originally believed, but impaired hearing impacted his ability to respond during the first few weeks. Since this discovery, Luke’s therapy team has begun re-evaluating his condition. Luke still has periods of reduced consciousness, but he is responding well to written efforts to communicate. And as his brain heals from the trauma, we hope and expect to see his consciousness improve further so he can engage in intensive rehabilitation.

Luke’s family has great hope that he will soon be eligible for treatment at Craig Hospital, an excellent facility in Colorado specializing in rehabilitation for Traumatic Brain Injuries (TBIs). Once he is believed to be ready, admission to the hospital could occur within weeks after acceptance to the program. If for some reason Luke is not accepted in this program, his family will work to place him in another TBI rehabilitation hospital. 

This fundraising campaign was started by a group of Luke's friends who want to help Luke's wife Kris pay for medical expenses that are not covered by insurance. Donations will help Kris focus on their children and on Luke's recovery--and not on the significant financial stress caused by a health crisis like this. A medevac transport to Craig Hospital will cost almost $40,000 out-of-pocket. Since admission turnaround is very quick, we need to help the Simpson family raise the funds now even though he has not yet been accepted to a rehabilitation program. We are extremely hopeful based on what we have seen so far, but even if Luke is not able to go, other out-of-pocket medical expenses are already believed to be over $20,000 after only one month of care. Even in the best case scenario, Luke will need rehabilitation and care for a year or more. Once he is at home, much of his care may be out-of-pocket, depending on his recovery.

On behalf of the Simpson family, thank you so much for supporting Luke. Your contribution will help pay for important rehabilitative therapies down the road, and out-of-pocket medical and injury-related expenses that have already been incurred.

For detailed information on Luke's progress during the first month after his accident, please read the early journal entries at http://www.caringbridge.org/visit/lukesimpson.

- Sarah




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