Jeff's Journey will be a place where family and friends can come to get updates on our dad's condition and progress. We have a long road ahead of us and we hope that this blog can serve not only as a place for updates but also as a journal of strength and remembrance. We have faith in our Heavenly Father and his Son Jesus Christ and we know that through our faith and perseverance our dad will be healed. Though we have been told that the chances are slim (1 in 200,000) that our dad will walk again, we will be by his side to help him beat those odds. Our dad will make it through this challenging trial and we will be there to help him every step of the way! We love you DAD & GRANDPA!!

Thursday, June 23, 2016

Day 260 to 295, May 16- June 19


Day 260 to 295, May 16- June 19
 
First off, we want to apologize for how long it’s taken for the blog to be updated. It’s been a busy summer for everyone so far and we have a lot to report! Secondly, we want to thank you all for being patient and remaining supportive. While it seems like life has found a new “norm” for our mom and dad, there are still plenty of things they are still trying to figure out in this new life. Each new day seems to bring a new challenge. 
 
Jeff and Annette had discussed getting a handicap accessible van for several months and had even been out to look at some. There were several problems they kept running into. The main problem was their budget. The only vans that fit in their budget were older models. While older vehicles are fine in general, Jeff literally couldn't fit in them. Another thing was that many of them had problems that would be costly to fix on top of the asking price. 
 
What to do? Jeff was searching online when he came across a van that he thought might work. But, as always, there were road blocks. First, it was a salvaged title. That in itself calls the vehicle into question. Second, it was in Florida! Could we trust everything to be in order without seeing it for ourselves? Again, what to do?
 
We prayed. And then we prayed some more. Jeff made phone calls and sent e-mails and then it was decided. This was the van. Even shipped from Florida they saved at least $25,000 and stayed within their budget. Prayer answered! 
 

It has been everything we had hoped for, and more. As with most new technology there was a learning curve at first. Annette was hesitant and overwhelmed when she was trying to figure everything out. It doesn't even have keys! It only starts remotely and there are buttons everywhere that do so many different things. And it's been such a blessing. It saves so much time loading and unloading Jeff and saves Annette from the physically demanding art of transfers. We are so grateful!
 
One Sunday when we were spending time as a family the guys got Jeff’s hoist onto the truck so they could make some adjustments. Annette learned how to use it so she can get Jeff onto his bike by herself. The hoist has since been moved to the van and has been so much help!
 

Sisterly love! We sure love our new baby!
 
 
One evening Jeff and Annette met Ryan's family in South Jordan at the community ponds. He and Annette rode the paved trails around the area while Ryan's family fished. Soon they were joined by Brandi's family who was ready to get out of the house for the first time since little Aspen came home. 

The upgrades made to the road bike Jeff was given are adaptations to make it "quad friendly." Jeff has gloves that hook to the handles so he doesn’t have to worry about losing his grip while riding. The pictures below show Jeff getting ready to ride using the hoist to get him on the bike and then getting his gloves on and everything else in order. 







Cherie's family was in St. George so they weren't able to join them. We are so grateful they were able to get away and spend time together as a family! It was a much needed vacation. This is a picture of Aliyah sleeping on the drive home. Too bad it didn't last the whole way!

 

Aspen’s first real bath! Look at all of that black hair! 
 



Jeff and Annette have been going on bike rides regularly. This helps him build upper arm strength and self-esteem. On the morning of June 6th they made their way to the Jordan Parkway for their ride. The area where they normally get on the trail is down a very steep hill. Jeff learned a little too late that he doesn't have any leverage to push the breaks when the crank is in high gear and he wasn’t able to stop himself on the hill. He toppled right over and was stuck. This was his sixth time down this particular hill. Four times he made it without any trouble. Once before now he struggled with the breaks, but was able to turn sharp enough, fast enough, that it wasn’t too much of a problem (just a heart-pounding experience). It wasn’t until he crashed that he figured out what was happening. In low gear he has the leverage to push the breaks. Not so much in high. 
 
Thankfully he wasn’t injured (that he knew of) and the biggest problem was getting him back on the bike. As you can imagine, Annette was upset. And worried. And almost in a panic. At that time of day they didn’t expect to see anyone else on the trail. 

As they contemplated what to do Annette said a little prayer. It wasn’t much later that a couple came by on the trail! Not only that, but the man was quite fit and able to lift Jeff under the arms while Annette and the woman lifted each leg to get him back on his bike. It’s hard to describe the mix of emotions with this experience, even for those of us who weren’t present. Fear, anger, and anxiety being the first on the list. However, the answered prayer brought peace and comfort, increased faith, and a reminder of how much our Father in heaven loves us and how He is aware of us in our time of need. 
 
We are so grateful that our parents have the faith that they do. That our mom thought to stop and say a prayer and knew that it would be answered, one way or another. We are grateful the answer came quickly and was a simple fix. We are grateful our dad didn’t sustain another injury; on that hill it could have been so much worse than it was.  We are so grateful for a Heavenly Father who cares about us and is willing to send help when we seek it in faith. 
 
Jeff went to Neuroworx for his physical therapy the next day and was fortunate enough to be there when President Uchtdorf and his wife were there! President Uchtdorf said that another General Authority was getting a knee replacement and they were checking the place out. Jeff had the opportunity to speak with him and his wife and says they were very nice. The thing he remembers most about their conversation was when President Uchtdorf said, “The only difference between a physical therapist and a terrorist is that you can negotiate with a terrorist!” Ha! Annette was also able to shake their hands and meet them. Even though it wasn’t exactly a spiritual thing, it still left them both feeling uplifted.
 
The next morning Jeff went riding with Max. It’s getting hotter and hotter each and every day here in Utah. Unfortunately, that means trouble with Jeff’s condition. He is very much like a lizard now. His body will get too cold and the normal mechanisms (like shivering) will not turn on to build up heat. On the other side of things, he gets too warm and his body won’t sweat below the transition zone in order to cool him off. This means we have to be very mindful of the environment he is in and how his body is affected. 
 
When he was reaching the end of the ride he started to feel really strange. He became weaker and weaker as they got closer to home. By the time Max got him into his wheelchair he felt ready to pass out. Thinking quickly, Jeff asked Max to take him into the bathroom. While there, Max dumped four large glasses of ice water over Jeff’s head. Jeff says he was so overheated that the ice water didn’t even feel cold, just refreshing. Jeff then drank 3 glasses of ice water as quickly as he could manage. In the end he was soaked, but he felt normal again. 
 
Needless to say, lesson learned. To avoid heat stroke in the future Jeff goes riding very early in the morning now. We are so grateful for the prompting he received about the ice water, we know it was divine intervention. We are also so very grateful for Max and all he has done. It has meant so much to all of us that he has gone above and beyond the call of friendship for our dad.  
 
Every child has a “first” for everything. Some of those “firsts” hurt more than others and many times it’s the parent who hurts the most when bad things happen to their kids. That happened for our little Aliyah. She hadn’t been out of sight for long… It never takes long in these cases. Curiosity is good. It’s healthy. Unless it involves a very long flight of stairs. In a heart-stopping moment, thunk after thunk, Aliyah found herself at the bottom of those really interesting stairs. You can imagine the panic. 
 
Poor Cherie still hasn’t forgiven herself even though Aliyah had no lasting effects from the experience. A slight rug burn to the forehead was the worst of it. She did everything right, checking for all the signs of concussion or other injury. But it’s Jeff’s response to the incident that really tugged our heartstrings. He could hear everything as it happened and the helplessness of his situation really sunk in. Annette said she had never seen him so upset and worried. He felt the urge to go save Aliyah and wasn’t even able to move. It’s moments like this that make his condition so difficult. It was a very hard reminder of his limitations.  
 
Aliyah likes to eat breakfast with Jeff. This picture, taken the very next day, shows one of these sweet moments between them. They have a very special bond. If only our bodies could bounce back like hers did after such a fall! 
 

Tylee had been struggling for the last several months with ear infections (or one big one that wouldn’t go away). She had so much pressure in her ears that the tympanic membrane was not vibrating at all. The surgeon said it equated to about a 20 decibel hearing loss and would lead to speech problems. The solution? Placing tubes in her ears. It was a simple procedure, done under general anesthesia, that only took about 15 minutes. She tolerated it well even though she was angry for most of the day afterward. Her ear drums were very stretched out and will take some time to heal. We are looking forward to her feeling better and maybe even sleeping at night! 
 


June 11th was Aliyah’s first Birthday!! This sweet munchkin has been such a blessing in our family. She is always smiling, loves her family, and has a big personality. In Cherie’s words, “A year ago today this little cutie, at 37 weeks and 3 days, weighing 6lbs 5oz, made me a mom. Being her mom is one of my greatest blessings. She has taught me and continues to teach me so much. She is a big mommy’s girl, loves to be outside, and will eat pretty much anything you give her (cheerios, bananas, and goldfish are her favorites). She still has no teeth, but has the best smile and laugh that lights up my world and is contagious.” We sure love our little Aliyah and had fun celebrating her special day!
 





Little Miss Dainty wasn’t interested in getting her hands dirty! It was so cute!
 

Jeff and Annette spent time in Park City with Ryan’s family. Jeff had to be there for meetings. (He is a member of the board for the condo they own.) It was their first time staying in Park City since the accident. They had to trade to a handicap accessible condo and ended up right over the garage. It wasn’t too terrible and it put them really close to the conference room Jeff had to meet in. 
 






Once again the portable lift system has been such a blessing. It was brought home from St. George so they can use it other places (Park City and Fountain Green). We don’t know how Annette could do all of Jeff’s cares without it. We hope the person who donated it to us knows just how grateful we are to them. 
 
The first night was hard because the beds are only queen sized. Every time Annette touched Jeff his nerves would start to zing all over his body. It was not restful and the next day was pretty miserable trying to stay awake.
 
They woke to discover the horrible event that had taken place in Orlando, FL. Our hearts go out to those who lost loved ones. You are in our thoughts and prayers! We hope you will be able to find peace through the turmoil that has happened. 
 
Jeff and Annette stayed in the condo at Park City until Thursday, while Ryan’s family left Sunday.  Poor Annette was sick with a migraine, head cold, and throwing up the rest of their stay. Taking care of Jeff while being sick was a huge trial. We are so grateful she found the strength to do everything required of her despite her illness. She is such a wonderful example to us of long suffering and faith.
 
Even being so sick Annette was able to take Jeff to the National Ability Center, an outdoor store that caters to handicapped individuals. Jeff was able to ride an off-road bike for the first time. With one tire in the back and two in the front it turns smoother, is more stable, and is all around easier to ride. It’s more complicated to build, but works a lot better. 
 


The one he rode is much like the one he would like to have one day. With all the quadriplegic adaptations it will cost $14-15,000 to build. It might be far in the future before he is able to have one of his own, but it gives him something to look forward to and we are grateful he is able to try different styles of bikes out so he knows what will work best for him before making such a large purchase.  
 
Look at this sleeping beauty! Aspen Rae. Already getting so big. 


We want to wish all of the men in our lives a happy Father’s Day! We are so thankful for the opportunity to celebrate you and all you do for your families. We want our dad to know how much we love him and how proud of him we are for how he has held up against so much adversity. He is such an extraordinary example to us, our children, and future generations. 
 
We were able to spend the afternoon together and chose to have lunch at the Riverton Park. The kids (and adults!) loved it and it’s something we are looking forward to doing more often. 
 







Afterward we went to Clifton and Joyce Green’s house for homemade ice cream and brownies. Spending time together as a family is one of our greatest joys and it’s extra special when the extended family (on either side) gets to share that time with us.  
 







Aliyah loves her baby doll! She's the cutest "mini mommy" around!



Our forever family!


As far as the general information about Jeff goes, he continues to visit the doctor for wound care each week. The wound on his back has improved the tiniest bit, but the sore on his hip remains the same. As long as it isn’t getting worse we are determined to be content. 
 
Jeff still visits Neuroworx every week for physical therapy. He says he isn’t doing anything new, just the “same old stuff.” This includes strengthening and endurance exercises.
 
The insurance will only cover 20 visits of occupational therapy per year and unfortunately they ran out far too quickly. It’s interesting that the severity of the patient’s condition isn’t considered. As it is, we are grateful to say Jeff has an awesome O.T. who really cares about him and how he is doing. They are discussing possibly trading work. Kasey will get repairs to his truck that he is needing and Jeff will continue getting the therapy he needs. The finer details are still being considered.
 
We are so happy to report that the Durango was finally sold. Jeff hopes to sell his bike and Bronco next in order to raise the money needed to finish their basement. More on that project will be posted in the future. 
 
Please note the updates made to the Q & A page as more has been added! 
 
Again, we want to thank you all for the kindness, love, and support you have given us. You have made a difference in our journey. We have felt the love of our Father in heaven through your works. We have been touched by your thoughtfulness. 
 
Life is not easy. Times in our lives have seemed easier than others, but we understand that everyone is fighting a battle. Thank you for thinking of us and serving us when we know many of you could use the same support and love in your own lives. We pray for you. We pray that you be blessed ten-fold for all you have done to be there in our time of need.

 
 

Monday, May 16, 2016

Day 246 to 259, May 2-15

Day 246 to  259,  May 2-15
 
These past two weeks have flown by. Jeff has had very busy days with many appointments and a lot to keep him busy. The most exciting news we have is about the birth of his 7th grandbaby!
 
First, update time. Jeff has really been struggling with the nerve pain in his transition zone (through his hands, arms, and chest). Most days are bad lately and it’s getting old. Please pray with us that he will be directed to an answer to decrease his discomfort. Life is difficult enough to enjoy with the paralysis, but adding chronic pain to the mix is disheartening to say the least. 
 
Jeff feels the medication he has been taking to decrease the sediment in his urine has been helping. He also decided to try a different brand of suprapubic catheter and the new brand has been awesome. It doesn’t clog like the other kind and the amount of blood clots in his urine has significantly decreased.
 
Jeff cut out all bread from his diet. He hates eating carbs and knowing he isn’t able to burn the calories. Body image and health have always been important to him and he struggles with both on a daily basis now. One of the biggest problems he experiences is that he never feels full and always feels hungry. He works hard at portion control and finding ways to decrease calories despite his sweet tooth. 
 
Jeff continues to go to wound care each week. His hip and back have been pretty resistant to the different treatments they have tried up to this point and so a new plan was proposed. It might sound outright gross, but at this point in time we are willing to try whatever they feel might benefit him. Pieces of donated placenta (tested as vigorously as blood is) were placed over the wounds after a thorough debridement. The following week his hip showed improvement! We are hoping this coming week’s appointment will give us more good news and also show improvement to his back sore. 
 
Each week Jeff still meets with the “Trails” program at Liberty Park to allow him to try different hand cycles. He tried a mountain cycle and really enjoyed it saying, “It was fun to go shooting down the grass!” 

 
These pictures shows a tender moment between Jeff and his granddaughter Sierra (4 years old). She was trying to help him eat lunch and was being a little too helpful. 😉
 


And the moment you’ve all been waiting for! We are so blessed to announce the birth of Aspen Rae Benson on May 5, 2016 at 6:45 pm. Aspen was 7 lbs. 5 oz. and 18.5 inches long. She is a true beauty and the sweetest baby. She frequently laughs in her sleep, eats very well (and very slowly!), and loves her head to be rubbed. Brandi is doing well and recovering from her C-section slowly. We are grateful for her doctor’s help in getting Aspen safely here and for getting Brandi on antibiotics at the first sign of a problem with her incision (which is doing much better now). 


Aspen Rae Benson
 

 


Her sisters were sure excited to have her here and love her so much already!





Sweet daddy/baby moment.


First bath. She loved getting her hair scrubbed!



Look at all that hair!






Sorry-not-sorry for the picture overload. It was hard to narrow it down this far! Ha! We sure love our new baby girl!!

We hope all of the women in our lives had a great Mother’s Day and would like to take a moment to recognize Annette. 

Our mom holds us together even when she is struggling herself. She is the greatest example of selfless service we have ever known. While her whole life has changed, she still finds it in herself to serve others each and every day. While her job as Jeff’s caretaker is not easy, she never gives up and always does her very best. Her love for our dad shines in everything she does. Her example of unconditional love and dedication is awe-inspiring. We, as her children, are better people for having her as our mom. Our kids love their grandma so much and we are grateful for the Christ-like love she always gives them. We love you, mom!! 
 

To end this week it was Julee’s 28th birthday on the 15th. Annette made her a beautiful cake and it was fun to spend the day as a family.
 


Tylee fell asleep less than two minutes after this was taken. Lol!


Miss Aliyah sure loves her grandpa!

Our family has so many things to be grateful for, despite the trials we are fighting. We want to thank everyone for your continued support and love. Each day brings something new, be it struggle or relief, and we are grateful to know we are not alone through any of it. ❤

Wednesday, May 4, 2016

Day 223 to 245, April 9-May 1

Day 223 to 245, April 9-May 1

A lot is going on in Jeff's life right now. We'll do our best to give a thorough update and then more frequent ones in the future. We encourage you to keep asking questions that will help Jeff open up about what he's going through. 

Jeff says, "I'm sorry I haven't made the time to tell my side of the story and share my feelings. Life's been really busy and I find it difficult to talk about myself so I struggle to do it. I've never blogged or kept a journal before so this is all new for me... It's not something I'm used to doing."

That being said, he did very well when he answer the first question that was added to the Q&A post. There was no hesitation. He just needs help to know where to start talking. As questions come in we'll post them with the answers to that page. 

So what's been happening these past few weeks?

Jeff and Annette spent some time in St. George with their good friends Brent and Janet Lloyd. Jeff says they had a great time, but the 4 days were too short. He feels that the effort it takes to get him there warrants at least a week of actual vacation time! 


We want to thank Brent and Janet for helping to make their trip so wonderful. Both Jeff and Annette mentioned several times how helpful they were and how great it was to spend that time with them. We want to recognize them for their service, especially when Brent wasn't feeling his very best either. It's not easy to transfer Jeff and help with everything he isn't able to do on his own, yet they told Annette, "Just let us do it. You do it every day." 


Jeff and Annette's favorite activity of the trip was riding the bike path down Snow Canyon. 


Back home Jeff continues going to Neuroworx for physical therapy twice a week. He says things are going well and he's happy with the small amount of progress he's making. He always makes sure to use the spin cycle simulator to help strengthen his arms and prepare them for a real hand cycle. 

Jeff said, "The nights after I do therapy I feel better than usual. But the day after I feel very sore and stiff."

Kasey still works with Jeff once a week for occupational therapy. We try not to think about how many days are left that the insurance will cover because Kasey has been such a blessing to us. Even when the days have run out there is talk about possibly trading work so Jeff will be able to continue therapy. 

Jeff also continues to go to the wound care clinic once a week. Unfortunately the healing process has seemed to level out at this point in time. There seemed to be a lot of progress that first month, but not much since. We continue to pray that the sores will remain free of infection and heal without complications. 

Our family has recently experienced yet another miracle in this difficult chapter of our lives. It all started with Brandi's desire to help get Jeff interested in some kind of activity that he could enjoy. Naturally, she felt biking would be a good fit. 

We've noticed in the past that when Jeff watched videos of other handicap people biking he would point out their obvious advantages. "He can use his arms." "He is young and fit." "He has his hands..." That kind of thing. It was almost discouraging to him to watch them. 

Thanks to a little digging Brandi was able to contact a man about possible modifications to a hand cycle so Jeff could ride. It turns out that man is also a quadriplegic without the use of his hands. He directed Brandi to YouTube videos where he showed how he was able to ride a hand cycle. 

Finally! A lightbulb was turned on... This is actually possible! Thanks to the people at Neuroworx Jeff was connected with a program based out of the U of U called "Trails." Through them Jeff was able to try out a hand cycle for the first time at Liberty Park. He's even gone back for more since then. 





This really was the emotional boost Jeff, Annette, and our family needed. It was incredible to see him riding again! Now to getting a hand cycle of his own that he can regularly use... 

More research led Brandi to a grant program and they spent hours filling out an application about why Jeff is a good candidate for a grant to help him obtain his own hand cycle. From the day she learned of it they had a week to get the several paged application turned in. With hard work and determination they did! 

One of the things they needed to know was the estimated cost of the hand cycle model that would work best for Jeff. Unfortunately it is about $13,000.00. If Jeff is chosen to receive the grant they will pay a portion of the basic model of the bike. The remainder of the cost will be a hurtle we'll deal with if we get that far. 

In the meantime, Jeff started looking on KSL for hand cycles that he might be able to modify and use. One caught his eye and soon enough he and Annette went to look at it. What they found when they got there was completely unexpected. 

The woman who was selling it was unlike anyone they had met before. Some of you may have already heard her story. About 11 years ago she had a c-section and ended up with a staff infection. The infection led to the loss of both legs and an arm. Today she lives a very normal, active, and healthy lifestyle! 

After introductions and the exchange of stories Jeff looked the hand cycle over and felt he could make it work. Due to the long list of changes he'd have to make he thought he would try to negotiate the price down a little. After he stated his offer her response brought them to tears. 

She had posted the bike at that price to see who would come to look at it and what their circumstances are. Jeff fit the bill of what she was hoping for and she offered him the bike for free. Her only stipulation was that when Jeff is done with it he pay it forward to the next deserving person. 

This kind and selfless act will forever be remembered by our family! It was a definite miracle to us and we are so beyond grateful to this woman and her family. The money Jeff saved by not having to pay for the bike was spent on the necessary modifications it needs to make it work for Jeff's specific condition. 

Someday, grant or no grant, Jeff will get the $13,000 bike tricked out with everything a quadriplegic needs. When that happens he'll gift this miracle bike to another person in need. In the meantime we are beyond grateful he has a bike that he can use to help him gain strength, get exercise, and get jazzed about life again!

The parts Jeff ordered for the bike should arrive in the next week or so and he said he's looking forward to the exercise and practice. 

We are still hoping to sell Jeff's mountain bike that has been posted on KSL for about a month. While there are many views on it, no one has called. Please pass the word onto anyone you know that might be interested! The link is:



On another note, a screw stripped out on Jeff's power chair and he was told it would cost $400.00 to replace the part. A little ingenuity and several stores later and they were able to fix it with a long screw and a nut for about $2.00! 

Another exciting part of Jeff's life right now is the forums he is attending each week. His friend Max comes to pick him up, transfers him in and out of the truck, and takes him to the meetings that are specific to people with paralysis. 

The first week they learned about treatments that are now available for newly injured people. Jeff said it was kind of depressing because it's too late for those already injured, but thankfully he stuck it out and has learned some cool things in later classes. 

The second class focused on pain management and care of the shoulders. As you can imagine the shoulders get especially abused as people with paralysis become more independent. 

The most interesting class by far at this point was the third one. They discussed stem cell research. There are two kinds of stem cells, "embryonic" and "adult." The purpose of stem cell research is to find a way to grow new nerve cells where the original ones have died (which is what causes the paralysis). 

Embryonic stem cells (retrieved from actual fertilized embryos in a lab) show the most promise, but they are also the most dangerous. If they leave the injection site they form tumors. 70% of rats who had embryonic stem cell implantation died from tumors. 

Adult stem cells also show promise and are much safer. They come from your own body from either your bone marrow or your sinuses. Testing has proven them to be much safer than embryonic, but they are still in trials. 

Next week Jeff will be learning about implants that could be used to treat paralysis. He said, "We hope it's promising," and is looking forward to going to it with Max. 

It has meant a lot to Jeff and Annette for Max to take the time to go with Jeff and take over his care while they are out and about. It's not easy to do all of the transfers and to know how to help Jeff when he needs it and it means a lot that Max has learned how to do it all. 

We definitely can't forget to mention that Sierra's 4th birthday was on April 24th! We are so grateful to have this beautiful, energetic, smarty-pants, sassy girl in our family and it was so much fun celebrating her special day together. We love you Sierra!





We feel so blessed for all of the great things happening right now for Jeff and our family. We see the Lord's hand guiding us through each step of this journey. A huge thank you to everyone who sends warm thoughts, prayers, and kindness our way. It really has made a huge difference. From a simple text to bringing a meal (Josh!), your efforts have continued to uplift and sustain us through the hard moments. 

We ask for your continued prayers at this time on behalf of Jeff's mom, Peggy. She's been through a lot lately and still continues to be a strength to us all. We pray for her health and for her to know how much we love and appreciate all she does. If anyone deserves blessings, it's our "Grandma Geggy."

Thank you all for your continued support and love!