"See Dan Day" at Neuroworx

Thursday, March 27th was "See Dan Day" at Neuroworx! The entire Neuroworx team surprised Dan by all wearing their "See Dan... " shirts. He was really happy - they are such a great group and so supportive of the people that they work with. It is great to have such a great team to work with, and Dan really likes it there.

He also has been going to the SCI forums that they are a part of - these are held every Tuesday night at the Gallivan Center in downtown Salt Lake City. He sent me a text last Tuesday and said - "I'm on the TRAX, and I'm going to the Gallivan Center". He did the same thing tonight... I just barely went an picked him up from the bus stop (at 10:43 pm) - so it makes for a long day. I have a conflict on Tuesdays and I can not get away to go with him to these events. It makes me nervous to have him out this late at night on his own, but he doesn't always listen to me.... so we say a prayer and hope that he will be protected. If anyone wants to spend a Tuesday night with Dan - let me know!

We have had a great week - we had a fun Easter - we had all the kids over for dinner and it was a good time. I would like you to see our favorite Easter egg -- this is Wilson.



Kallie and Angie had a good time coloring this egg... they went over to the corner of the kitchen and huddled - working on their piece of art. They went and got the movie "Castaway" to make sure that they did the face right - and then they went and found the hot glue gun so that they could put on his "hair".

I just don't have the heart to eat "Wilson" - that is the only problem!

Pray for Chris...

To all our friends and family --

We would like to introduce you to some very special friends that we have met during our "stem cell journey". Meet Chris Barnes and his wife, Koo...





You can follow their story at Chris Barnes Blog

When we were deciding about whether to come to China, it was Chris and Koo that gave us hope and courage to come. Koo is an amazing woman - she is a loyal and dedicated wife - who stands by her man and does all that she can to help him recover. They are now in China for a second stem cell treatment for Chris! Chris has made so much progress over the last year - and we pray for his continued improvement. Please join with Dan and I as we follow their courageous journey to China and pray for the blessings of Heaven to be with them at this time!

Go Chris and Koo!!

"Get over it!... and move on..."

I am sorry for not posting in so long - we have been heads down just trying to get our life in a new rut... a good rut! It does take a lot of arrangements to do logistically, but I think we are getting there.

For LaNae - she just finished up a major project at work (wahoo!), attended a youth conference with a group of youth and then got to see a nephew get married in the same weekend-- way to go Braden and Tiffany!



Here is a really cute picture of my (great) niece and nephew, Emily and Harrison... aren't they adorable?!



Now for Dan -- he got to come to the wedding too... but other than that he has been on a pretty rigorous schedule with therapy. He goes up to Neuroworx on Tues, Thurs and Friday and is focusing on trying to improve his gait. He doesn't have the awareness of what his trunk is doing and has used his trunk (main body area) to get his limbs to move. So, in order to move his hand, he has compensated and twists his body to get his arm to move. He does the same with his legs, so his walking is a process of moving his body to get his legs to move. Right now, in therapy, he is working on focusing keeping his trunk straight and getting the muscles to work to properly move his leg through and transition his weight without the body movement. He is making good strides... improvement is slow... but it is there, and for that we are thankful.



This is Dan working out some of his unused leg muscles on the parallel bars....



Here Dan is walking up straight and tall AND without a leg brace!!


This is Dan standing on an upside down exercise ball and trying to balance on it... this is kind of hard! (I tried it...)






I am also trying to get more protein and amino acids into Dan's diet. He drinks a protein shake every day, along with some protein bars and his usual vitamins twice a day. We are done taking all of the medicine that we got in China, so we are on a regular diet with supplements. Dan takes a lunch with him on the days he goes to Neuroworx... so the routine is this - I take him to the bus stop on my way to work, and after an hour bus ride, he is picked up from the bus stop in SLC by the paratransit service, and then about 10 minutes later he is at Neuroworx. He sends me a text so that I know he is safe and sound there... then it is a full days work for him. He works out on the equipment on his own as much as he can, at 11:00 - he goes into the pool and does his aquatic therapy, then he DRESSES himself!! (this is good- very good!) ... and then he usually eats his lunch and has another set of therapy in the afternoon before either a family member comes to meet him, or he comes back home on the bus via paratransit / UTA.

I think the people at Neuroworx are enjoying Dan's sense of humor.... they send a little radio handset in with him while he is dressing, in case he falls or something, he can press the button on it to get some assistance... well - the other day - he got all dressed, wheeled himself out to the main area, and then pressed the button (he was in the same room as his therapist) and then laughed his head off when they said - somebody better go help Dan...! He thinks he is pretty funny for sure! [uh... Dan... have you ever heard the story of the boy who cried wolf?!]

Another good quote from Dan is "Get Over It!" I guess he was transferring from his chair to a piece of equipment and Jan (the head honcho) looked across the room and said -- "You still make me nervous..." to which Dan replied... "Get over it!" We think it is a pretty classic Dan quote -- they should put it on their wall! Jan had a good laugh and enjoyed telling others how Dan told her to "get over it"!

So all is well with us... we continue to work hard, and we feel good about the effort we are putting out. The progress is slow, but there is some progress and for that we are grateful. We continue to put our trust in the Lord and know that we will be blessed for our efforts. We will get the maximum benefit from the stem cell treatment - and we will take it as far as we can take it. Where ever our journey may take us, we are happy to go, for we know we will learn much in the process. We have a loving Heavenly Father that cares about us, and will bless us through our trials. This we have learned over the years and so we continue to put our trust in Him, knowing whatever the outcome, it will be the best outcome for us. But for now... we just keep workin!

A Day in the Life of Dan...

This is Dan working out in the pool at Neuroworx, as Dan was working on therapy there. He really enjoys going there and we think the therapists are top notch. We only wish we could have him stay longer and get more help.

Let me tell you about our day on Friday... but to begin, I would like to start out with a disclaimer so that you don't think I am a neglectful caregiver. (I might be, but I hope you will understand...) Dan has enjoyed quite a bit of independence over the years as he refuses to stay at home and do nothing. He has a recumbent bike that he rides all over the Orem / Provo area. He rides it into stores (it is his summer wheelchair), and if he ever gets into a situation of needing help, he has his cell phone that he can call or text with. He also has ridden the bus by himself from our home, all the way up to the University hospital in Salt Lake City. That required that he ride the bus to the TRAX station, change and ride the Trax and then be picked up by the ParaTransit service which would take him the rest of the way. I worry at times about him, but he is determined to do what he wants and get where he wants to be, and such has been our life.

On Thursday, we made arrangements for him to ride up to SLC to go to Neuroworx on the bus to the Trax station, and then made arrangements for the paratransit service to pick him up there and take him to Neuroworx. He sends me a text message at each point along the way so that I will know everything is going well with him. So I get a text -- "made it to Neuroworx" or "on the bus", and even though I am at work and sometimes tied up in meetings, I know how he is doing.

Friday, however, there was quite a few mix ups... I got him on the bus at 8:12 am and then I headed for work and he was off to Salt Lake City... at about 9:30 am, I got a text message from him that he was at the Trax station, but that the Paratransit service was not there. I called Paratransit, and they told me that I had scheduled the ride for Saturday (NOT!) and so no one was coming... they put us on hold while they listened to the recording of the scheduling call, as I did tell them the schedule was for Friday, not Saturday. I then called my sister-in-law who lives in South Salt Lake City and asked if she could go over and pick up Dan and take him over to Neuroworx. She was happy to do so, and so I called Dan back and told him that she was on the way to get him...

Well - they got over to Neuroworx, and the main therapist wasn't there that day, and they didn't want Dan to stay there (he was early). They were nervous about liability issues if he were to fall or something like that... and they haven't worked with him enough to know what his abilities are. so they asked him to come back at 1:00 for his appointment. When we first decided to go there, we had been told that Dan was welcome to come and work out at the facility at other times than his appointed time, so this was a surprise to us. Anyway -- I am stuck at work and am fully booked until noon, and I can't get away to go get him. So he went over to my brother's home for a few hours and then they took him back at 1:00, and by then I was able to get away and meet them there. So it was a crazy day....

We will meet with the team at Neuroworx to get this resolved, as we are looking for an aggressive therapy program for Dan, and 3 hours a week doesn't cut it. The plan was to allow him to work at the center for at least 4 hours each time he went up. We may have to hire a caregiver to go and assist him so that they will feel better about him being there. Apparently, other patients that come and use the facility do have a caregiver with them that can provide assistance. So we will need to figure this out... We do really like the center and feel that they have a lot to offer Dan. They have been spot on in their evaluations, and are really helping with the time that he has been given. We just need to make arrangements so that we can get more of this good care, as they are really good at what they do.

We will keep you posted as things progress...

Keepin' on...

We continue to move forward with therapy and more therapy... ;-). Sometimes it seems like the same old, same old... and that the progress is so small that we don't even notice it. Others tell us that Dan has improved, that he stands taller and that his handshake is much better. We notice that he continues to get stronger because of all his therapy - but not faster. In fact -- I have really been challenged lately in the area of patience because of his slowness. He tries so hard to improve, but it seems at times that it is slow in coming, and that gets frustrating at times.

Now don't go thinking we are all depressed or anything like that... we realize that it will take some time to make the improvements that we desire. We measure progress in months and in years, and so when people ask "How is Dan doing? Is he better yet?" - I respond with "Give us a year... and then I will tell you." We want things to be so immediate, and we all want results NOW... and I probably want them more than anyone, but just because it takes some time to see results doesn't mean they are any less valid. I have had the impression lately that we need to do all that we can to help Dan achieve progress, and that our Heavenly Father usually doesn't do for us what we can do for ourselves. ...and so we continue on... knowing that He will be with us in the journey and that we are growing in the process.

Here are some pictures of Dan and his NEW LEG BRACE...



Getting the right fit...





Practicing walking with the new brace! It will take some time and adjustments - but this is a great day!






This week will be a busy one -- I have a project that will launch next week, and so I am in the final stages (which means it will be a looonng week...) Dan is set to start up at Neuroworx with pool therapy this week. He will go Tues, Thurs and Friday, and I am still in the process of figuring out how to get him transported to SLC and back as well as having someone there to assist him after he gets out of the pool. So far, I have volunteered our children and my brother to help - and they have readily accepted! We are so grateful for the help that others give to us...!

We will establish a more regular routine with this therapy over the next few weeks, and then it will be easier as we will have a regular schedule to work around. The program is to have him go to Neuroworx three times a week, and then go with a friend to a facility at the local hospital on the other two days and work on a home therapy program. I talked to the therapist at Neuroworx and she will be writing up a program for us to follow. I asked her to kind of "set the bar" so that we will know what we need to be doing to supplement in a home-based program.

.. and so we continue on... may we all remember that great things can come if we will just set our course in the right direction and continue on... one step at a time. As long as we keep going, we will eventually reach our destination. ... and so it is with us and our journey in Dan's recovery.

New Therapy! (Neuroworx)

Dan and I have been busy, busy -- I have had a lot going on with work, and Dan has a lot going on with therapy. He has been keeping up his routine at Now I Can and Orem Physical Therapy during the month of January. This has kept him busy working at both of these places, in addition to working out on the Quadriciser at home every day. On Monday at about 5:50 pm - he sent me a text message -- "Do I need to catch a ride with somebody?" I was heads down at work trying to finish up some things, and I had forgotten to go get him from therapy! ... and to top it off... one of the workers DID give him a ride home! We got home about the same time that night.... I am glad there are such good people in the world that watch out for Dan (aren't you?!)

In the meantime, we have been evaluating another facility to take Dan to for therapy (Neuroworx) We ventured up there on Human Rights Day (Jan 21st) as I had the day off. It was a major snow storm that day, but we have a 4-wheel drive, and made it through the deep snow quite handily! We met the founder, Dr. Dale Hull who is a medical doctor that had an injury on a trampoline and became a quadriplegic. He is amazing - because he now walks - without a cane or walker! He started this foundation along with his therapist (Jan Black) and work specifically with patients that have spinal cord injuries. We are thrilled to work with them as they know how to push hard for results and are specialized in recovery therapy.

They have a pool that has a treadmill with cameras that allow them to see what is going on with walking in the water. Here are some pictures of Dan in the pool today - we had a general evaluation there last week, and went back today for an aquatic evaluation.

Dan getting "loaded" into the pool...



Dan "swimming" - trying to get his arms to work...



Dan working against the water resistance with his arms...


Dan walking on the treadmill...


Check out those sexy legs!


(Sorry girls -- he's already taken!)

We will post some videos tomorrow - just know that we are excited to get going on this type of therapy as we think it will be really helpful to Dan!

We also are working to get him a new leg brace -- hopefully a lighter one. We have been traveling up to Salt Lake City for that as well, and last week they took the cast of his leg. We go back next Tuesday to pick it up and get it fitted. He has not been using his brace and his walking is "really -- really slow" without it. We are anxious to get this brace AND get him in therapy at Neuroworx. Jan Black(the clinic director) pointed out several things that Dan does to compensate in the pool today. I am anxious to hear the recommendations and to get a plan in place working with them. I think it will make a big difference for us...

Sorry for not updating the blog as frequently as I need to... I hope you are still out there - checking in from time to time - to see how Dan is doing. We are still plugging away, and have great hopes that with time and effort, we will begin to see the pay off. Take care, friends.

22 Years......

Dan: Still working out on therapy at 22 years Post Injury!



Today was the big mile marker of 22 years since Dan's accident. It is usually a somber day, in that we stop and pause for a moment and reflect on how his accident changed our lives forever. Today, however was a good day. We went to church and also had our family over for dinner... it is always good to have the grandchildren come over... they are such a joy.

As I think back on our lives, I have known Dan longer with his disabilities than before.... and I still love him. I first met Dan in my small, home town of Soda Springs, Idaho. He was the 'new boy' that moved to our town, and the first time I met him it was at a service project where we were raking the rocks out of a local park so that they could plant some grass. I was smitten at first site, and used my girlish charm to get him to ask me out. I was his very first date.... we were sixteen at the time.

We became good friends in high school, but it did not develop into a romantic relationship until after he came back from his mission to Peru (for the Church of Jesus Christ of Latter-day Saints). I had written to him during the two years he was on his mission, and when he came home, he was ready to get serious! It was only twenty-seven days from the time I first saw him until he proposed to me! Crazy!

He still has the watch that he was wearing at the time he was hit by the car, up a snowy canyon road -- those many years ago. The crystal on the watch was broken in the accident. It was one of his favorite watches - he had earned it as a result of a sales promotion from Citizen, and it was a really nice Citizen watch that had both an analog and a digital display. (that was pretty cool stuff back in 1986!) Anyway -- I had the crystal fixed and got it all working again, and then engraved on the back of it -- "though battered and torn, and a little bit worn.... I still love you".

Years later, he bought me a really nice Citizen watch that has a solar face on it and it never needs a battery (it is great!). He engraved this on the back.. "Because you loved me, my world is a better place because of you". We really like that song - because you loved me... and have adopted it as our song... especially the 'you were my voice when I couldn't speak' part! Those who know us - know that I tend to translate a lot for Dan when his speech is unintelligible.

I guess I am a bit reflective tonight - on our journey together through the years. Yes, the accident was traumatic and changed the course of our lives... but it did not ruin our lives. We still have each other, we still have our family, and we still have our faith. Through all this, we have learned that happiness comes from our relationship with each other and with our children. We know that Dan will be fully normal in the next life, and that knowledge gives us much comfort. We also know that it is possible for him to be healed in this life -- and that technology will be advanced to be able to help him... and so we continue on.

I am so proud of Dan and all the therapy he is doing. We have not seen great improvements yet, but I know that if there are improvements to be made, that we are doing our part and we will see how far we can go with our first stem cell treatment. (I guess I should preface that comment with the fact that we HAVE SEEN measurable progress... and that is SUPER GREAT!!! The measurable progress has not made it to increased daily FUNCTIONAL progress - and that is what we continue to work toward.) We really do want to 'See Dan run..!' We want to see him have the balance to walk without fear of falling and to run! We know that we still have a long way to go to make this happen, but we are UP FOR THE JOURNEY! Just think what can happen in another 22 years...!

Thanks for all your love, your prayers and support. We couldn't do it without YOU!
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Keep up the good work, Dan!!