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!” 

https://m.youtube.com/watch?v=TVg06snhHVs

 

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. ❤

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:

https://www.ksl.com/index.php?nid=218&ad=39218259&cat=191

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!

Q & A

It's been a while since our last update. Really it's a testament to how difficult it's been for our dad to open up about what he's experiencing and feeling. We will compile the info of the last few weeks for you all soon, but in the meantime we'd like to open a dialog for our dad. 

Either down in the comments, in person, through a text message, or via email, ask Jeff your questions. We feel a Q & A might be a good start for him to open up. He has expressed his desire several times to post something of his own, but when it comes down to it he just can't seem to find a good place to start. 

Don't be shy, we know there are many questions left unspoken at this time. What would you like to know? 

At the discretion of Jeff and Annette answers might be posted here or sent privately. Either way we know it will be therapeutic for Jeff to express his feelings and share his thoughts. 

Thank you all for your patience and continued support. We love you!

Q: Do doctors recommend mental health therapy in addition to occupational therapy and physical therapy in order to better cope with a trauma like what you've experienced? If so, has it taught you anything you'd be willing to share with us? If not, what coping strategies have you had to put in place to adjust to this different structural life?

A:They do normally recommend mental health therapy, but I was interviewed by three different psychologists in the hospital after I was injured and they said I was okay. I agree. I was blessed enough to have a positive attitude from the time I came to the hospital to the time I left so I didn't need psychiatric help. 

Coping strategies? Geeze... You just have to stay positive and cope every day. I've been blessed to have family and friends who are here to support me. I'm just grateful that when I "signed up" for this Annette did too. If she wasn't in this with me I don't know how I could do it. 

Q: What is the hardest part of your daily routine?

A: Annette has to do so much and I can’t do anything. The hardest part really is the fact that I can’t do anything for myself and how much everyone else has to work because of it. 

 

Q: Is there any task you’ve tried that was much easier than you expected?

A: Nothing comes to mind. I can’t think of anything I thought would be hard and was easier than I expected… Getting fat was easier! Staying thin was much harder than I expected! 

 

Q: What is the most frustrating part about being paralyzed?

A: Again, just that everyone has to do everything for me and I can’t do anything on my own. My hands and legs are useless. All I have is my mind and I can move my arms. It’s very frustrating. 

 

Q: If you could give one piece of advice to a person who was just seriously injured and unsure of the future, what would it be?

A: Keep on trying. Eventually everything will work out. You’ll get to the point that life will be enjoyable, like when you’re around other people. The best part of this life is family and friends. Life will be different and it’s not easy, but it can still be enjoyable. It’s worth the effort.

Day 204 to 222, Mar. 21- Apr. 8

Day 204 to 222,  Mar. 21- Apr. 8

It's been decided that the blog hasn't been serving the full purpose we intended. We will give brief updates from here on out about the things Jeff is accomplishing and some family updates as well. 

We will also be posting entries from Jeff with insight, in his own words, about his current situation. We feel this will not only be therapeutic for him, but also help others better understand the day to day trials he faces and how he copes with them. 

These past few weeks have flown by and a lot has happened. Day to day life is very busy for Jeff and Annette. We are all so grateful to see good things in Jeff's future. 

Jaxon had a birthday on March 23. Jeff and Annette's oldest grandchild is now 9 years old!

Talon had a birthday on March 29. This cute troublemaker is now 5. 

Annette used her creative talents to make Jeff a popsicle holder that will allow him to feed himself. It works great!

We hope you all had a great Easter! We are so thankful for the opportunity to celebrate the Resurrection of our Savior, Jesus Christ. We know that through Him, and His atonement, we can be a family forever. We also know that even if our dad doesn't walk again in this life, his body will be perfected in the next. 

Easter is a time of renewed hope as we ponder the blessings waiting for us, if we are faithful, because of the gift our brother gave us. If you have any questions about our beliefs or want to learn more, please ask! We are happy to share. You can also visit LDS.org where frequently asked questions are answered. 

In celebration of Easter Annette chose swimming suits out for each of the grandchildren. Cute little Sierra was more than happy to pose!

This past week Jeff and Annette went to a follow up appointment about Jeff's most recent neck fractures. The x-ray clearly showed the piece that's broken off of the C3. It's floating about a quarter inch away from the spine, not causing problems, and is about the size of the end of a finger (from the first knuckle to the tip). 

The x-ray also showed a bright spot on the C4 that shows new bone is forming where it was cracked. This great news means no more neck brace and full therapy!

Jeff continues to go to the wound clinic once a week. This last visit was a little different. The doctor that worked with him is the man who runs the clinic. 

He was a little more invasive with the debridement and actually used the scalpel to cut away the tissue that formed a ridge on the outside of the wound. He also made several slices with the scalpel inside the wound to make it bleed. This actually promotes healing because forcing blood to the area brings oxygen and nutrients to the damaged tissues.

The doctor also changed the ointment they were applying. Jeff and Annette were paying $210 a week for the previous ointment and are grateful for the change. He actually started Jeff on a cream made from bee honey in another country. Because the clinic isn't allowed to sell the cream they are giving it to him for free. This is a huge blessing and we are so thankful! We are praying it gives him the desired results. 

Jeff says his PT at Neuroworx kicked his butt this week. He worked so hard he could hardly move because his muscles were so sore. While he was exhausted, he was also grateful for the chance to jump back into therapy. 

The biggest and most exciting news we have about Jeff's progress is to do with the hand cycle he was able to try out. A huge thank you to Max and Blake for going with Jeff to make this possible! Many have seen the video already, but for those who haven't you can view it at: 

https://youtu.be/IYHSLkGd5pI 

Of the ride Jeff said, "Well today was the first time riding a Hand-Cycle. It was FUN and boy am I out of shape. I am trying to sell my bike to raise some of the money needed to buy a Hand-Cycle set up for a Quadriplegic, it will cost $13,000.00. It’s really sad how everything medical or for the handicap is so overpriced."

In order to raise some of that money Jeff is also selling some fitness equipment that he can no longer use. If you are interested in what he has available please contact him. He also has a few items listed on the KSL website. 

http://www.ksl.com/index.php?nid=218&ad=39218259 

Or, you can donate to the gofundme page that has been set up for Jeff at: 

https://www.gofundme.com/7s2p4cpk

Jeff getting on that bike was a very special moment for us and caused several happy tears. While we aren't giving up hope for further improvement in Jeff's condition, we also need to focus on his current quality of life. That means his physical and emotional health. A bike like this could help in both areas of his life. 

It worked him out really well causing muscles in his chest and back to ache in addition to his sore arms. It's these muscles that need to be strengthened to allow Jeff to be able to move his own body and gain more independence. And it gave him something to look forward to and a window back into the world that has been such a huge part of his life for so many years. 

You can imagine how great it felt for Jeff to get on that bike. We all felt it with him and are so grateful that such a bike exists. We pray for the means to get him one of his own and thank everyone who has already donated to help us get closer to this goal. We have been so blessed by your generosity!

Several people have been to visit Jeff and Annette and we'd like to recognize them. If you are missed in this list please let us know so we can add you. It's difficult to remember back so far since this update was so delayed. 

Max and Kim came to spend time with Jeff and Annette. Jeff and Max stayed home and ate a salad while Kim took Annette out to lunch. We are grateful to them both and are happy our mom had the chance to get out for fun!

Jake and Monica, old neighbors/friends, came with their daughter Kyara to visit one evening. Jeff and Annette loved seeing them and we are so grateful for their gift. 

Also, Brent and Janet found a real sheepskin fur cover for Jeff's wheelchair to help reduce pressure and make it more comfortable and we are so thankful for their kindness and being so thoughtful. 

If nothing else over the past few months our family has learned just how loved we are. We have been blessed by the words and actions of so many of you in these hard times. The Lord has answered our prayers by surrounding us with your love, concern, and support. 

Jeff is working on finding the words he wants to share with everyone. He wants to talk about his experience from day one and through the months leading up to now. He wants to share his story. It's been difficult for him to talk about himself because it's not something he's used to doing. Please pray with us that he will be inspired and find comfort as he sorts through his thoughts and feelings and puts to words all the things he desires to share.