Dan DeMatthew's Journal
Written Jul 2, 2012 11:19pm
I am back and apologize for not posting since Dan got home from RIC. I know everyone has been worried about us and I want you to know we are doing ok.
It was a very emotional homecoming and has taken some time for us to get back in the swing of things. We appreciate all the support and prayers sent our way during this adjustment period. Everyday is getting better and we are slowly falling into a new routine for Dan.
Our experience at RIC was very positive even though at times we didn't see it that way. It was very tough for Dan being so far away and for so long. Lots of changes in his life and some days it was hard for him to see the long term results but as he works through these changes he looks back and can see why things had to change.
We got him right back into therapy with the same therapist he had before RIC. He goes two days a week for PT and three days for OT. He still struggles with upper body weakness but I think that will be the rest of his life due to the location of his injury.
Last week we went back to Froedtert for botox mostly in his upper body so we hope to see some improvement in the next few weeks as the botox kicks in.
When we first got home from RIC he was nervous about me going to work for the afternoon but now is able to stay home alone. He set up his own exercise routine with biking,walking and stretching. Big break through last week when he was able to get on his bike independently. He hadn't been able to that for the last year and a half.
The crutches are totally out of the picture and the walker is his new best friend for getting around when upright. He doesn't go very fast but his posture has improved greatly.
He still uses his powerchair more than his therapist would like so that is something he needs to work on daily. They want him to start timing himself during the day on how long he stands. Something else I get to nag him about.
We still have many challenges we face on a daily basis. He is never really comfortable anywhere for a long period of time so going out is an issue. It is a process and we are taking babysteps to work through the anxiety he experiences with new situations.
Nights are still long again back to the fact he is never really comfortable in one position for any length of time. He wears lidoderm patches, hand splints,and topical anti-inflammatory gel to help with comfort but it only last for short periods of time. He even gets up and stretches on his stall bars some nights. He even takes melatonin but nothing seems to ease his discomfort. Hopefully we will figure it out.
We changed up is bowel program and he is having much success. I'm sure he loves me sharing this with you but that was a big problem this past year causing many of his issues. Bladder issues also developed lately so we are now seeing a urologist in town. Dan really likes him and he helped us with a plan to improve that part of the process to improve his quality of life.
Everyday is still a struggle for Dan. We never know what is going to bother him and limit him for the day. We continue to stay faithful and rely on God's grace to get us through the day. We give him thanks and know he will always be there for us just like all of you have been here for us.
Thanks for all your concern for our well being. Like I said when I started this post we are really ok. Tough at times but we are stronger for all we have been through.
Written May 22, 2012 7:49am
Well the big day is here we bring Dan home Wed. The time at RIC really flew bye fast. We feel very lucky to have had this 2nd chance for him.
The progress Dan made was good but he has a lot of hard work ahead and I know it won't be easy. Lots of changes have been made to his once familiar routine and we have to be strong and stay with these new changes.
We were able to get his wheelchair fixed so that will be a comfort for him. We still need to do some other adjustments but that will come with time.
Thanks again for all the support given to us during these past two months. We will need that same love and support when Dan gets back home to continue him on the right path.
He will have outpatient therapy 3 days a week. It won't be the same as the 3hrs a day at RIC but it will keep him going. I am not sure of the days or times but if anyone can help with driving him to his sessions it would be greatly appreciated.
Hope with the weather getting warmer you will see Dan out and about in his wheelchair or walking with his walker. The goal is to keep him active.
Feel free to stop over and visit with us we'd love to see everybody and it will be good for Dan's spirits.
I can never say it enough but thanks for everthing you have done for our family.
Written May 15, 2012 7:35am
Just checking in with the latest update on Dan.
Heading down to RIC shortly to spend two days with him as we prepare to bring him home. His stay has been extended until May 22nd due to wheelchair issues and hopefully resolve some other medical issues troubling Dan.
It has been a rough road for Dan. It started out promising but he hit a road block a couple weeks ago. He has had so many changes thrown at him it I think it just took a toll on him physically and mentally. He has made progress and is stronger but I think he would have liked to be further along than he is.
Bladder and bowel issues have been the biggest challenges and when you don't have those two components under control it's hard to move ahead.
Dan is now back using a walker instead of his crutches. It has improved his posture and walking but still getting used to the change. They added wedges to his shoes to help his gait and even out his legs something very hard to adjust to. The changes have caused him discomfort because he is using muscles he hasn't used in the past few years. We knew things had to change but somedays it's just hard for him.
We are so gratefull for this wonderful opportunity at RIC and like I said the changes were needed to improve his quality of life but like anybody change is difficult.
We are thankful to our families and friends who made the trip down to visit and cheer Dan on. We are thankful to the amazing staff at RIC for their wisdom and compassion given to Dan during his rehab stay.
We look forward to bringing Dan home and to continue working hard with outpatient therapy to get him physically and mentally stronger.
The reason for Dan's recent extension is due to a malfunction with his powerchair. Can you believe it! Another bump on his road to recovery. He's been using a chair from RIC but it's just not the same. Doesn't have the feature to elevated his chair for him to be independent with standing. We are bringing it home Wed with the help of Kurt Wahlen and Tom Christensen. It needs to be repaired in Wis. So, I have to rent a powerchair before he comes home so he can be independent on his return home. Always something but we can deal with it.
Better get going just wanted to let you all know what's been going on in the world of Dan DeMatthew.
With love and many thanks,