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.