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!!

Saturday, November 26, 2016

A year out of the hospital!

Well, I guess it's time to add to the blog again. It's been a year since I've been out of the hospital. It's been really hard and it totally sucks to be a quadriplegic. But we've received many, many blessings from people that help, programs that help, and grants that financially help. We are trying our best to make the most out of a bad situation. Most of the time life is good.

A few examples of the financial help we have received:

Many of you (friends, family and complete strangers) have donated funds to help us pay for so many of the things that we have needed. We appreciate it so much and couldn't have made it without the donations to help cover the cost of adapting our lives with me as a quadriplegic.

A complete stranger, but a common friend with Dale Hadley, gave us the lift system that we use in the bedroom and take on trips. It helps lift me in and out of bed and in and out of the different wheelchairs I need to use.

We had a lot of help remodeling our home: putting in wider doors and remodeling the bathroom for wheelchair access like the roll-in shower and roll under sink. My parents covered the costs that were not donated. That's something that would have been impossible for us to pay for. They also paid our house payment until our house was paid off which was something that we couldn't have done.

It's just crazy how much stuff costs, especially for the handicapped. They know you don't have a choice so they can charge whatever they want. But we have found ways to get some things a little more affordable.

We got a really good deal on a used full electric wheelchair for $2500 that was originally $25,000 when new.

We got a used 2013 Toyota Sienna van that we bought on eBay from Florida for $32,000 that would have cost $57,000 here in Utah. That's a big deal.

The hand cycle I would like to get cost $12,000 and takes months to get after it's ordered. So we started looking online to see if we could find a used hand cycle that would work for now. We found one and they were asking $1500. New it would cost $2200, so we went to look at it and see if we could talk them down. After visiting with them they told us it was donated to them so they would donate it to us. We had to pay another thousand dollars to get it so that it would work for a quad, but we would have had to pay the same amount to get a new one to work for a quad anyway.

We received a grant for $4,000 that will pay for one third of the cost of the mountain hand-cycle, but we need to raise the money to pay for the other two thirds. Hopefully we can do that by springtime, but the Hand-Cycle needs to be ordered now in order to be ready for spring. The grant has to be used by March, so now what to do?

We also received a grant that allows me to go to therapy at Neuroworx 3 times a week. This is a very big deal! Without it I would not be able to get strong enough and develop the skills to transfer in and out of the wheelchair on my own. This will make it possible to get in and out of bed and chairs without a lift. Hopefully it will also allow us to travel again and allow me to drive my truck.

We received a grant from the state that will convert my truck so that I can drive it myself and that's also a big deal. We would like to add a seat that turns and comes out and down to make it easier, but the seat alone is $9,300. So, as you can see, things are adding up and we're not sure how we can raise the money to get the seat and to also get the new hand cycle.

I am also trying to lose weight by only eating 500 - 700 calories each day with no sugar and very low carbs for the last 6 weeks. So far I have only lost 4 pounds. It’s going too slow and I'm not sure what else I can do.

Annette, Max, and Stan have all taken me out for rides in the hand cycle. Most of the time it's Max. Max also took me too several weekly seminars in the spring and took me up to Snowbird to get signed up for Skiing. I appreciate all that they do and their time that allows me to ride. It's been fun, but this hand cycle will only go on paved or cement trails and can't go up steep climbs with my weak arms. The new hand cycle that I want to get will go off road and has power assist so I can go up and not just level and down.

At therapy I've met a lot of really good people, therapists, and patients. A couple of the patients I've met are Josh, the young man that broke his neck in the bounce house at BYU; and Todd, the guy that everyone saw on TV that broke his neck in Hawaii on vacation. One good thing that happened to both of them was that they were on TV. They raised a lot of money on their gofundme accounts because of the TV and the attention they were given. While I wasn't on TV, we did raise a little bit of money and it helped a lot, but it's already gone.

I have good days and bad days. A few weeks ago I had five days in a row that were good with a lot less pain. That hasn’t happened before and it was great. Being a quadriplegic really does suck. I miss the old me every day and there is so much more than not just having the use of your hands and legs. I could go on and on about how hard it is and how many different problems we deal with every day, but life goes on and we are very grateful for all the help and blessings we have received.

Thanks to everyone that has helped, we appreciated it a lot.

Jeff




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