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!
