Hello!
Someone asked me today, as happens on many days, how Steve is doing. I always find that an interesting question to answer. The short answer is that he's doing well, progressing slowly but surely. Yes, we would love his progress to be faster, but we try to be thankful for every little thing. For example, sometimes when he eats he seems to "zone out" and not chew - just sit there with food in his mouth. This used to happen pretty constantly, but now very rarely. When it does we have found that it's usually because he has a crumb or some other small thing on his lip...all we have to do is wipe his mouth and the problem is solved. This week we noticed that even this is often not necessary any more, as he is able to lick his lips. Is this "doing well"? It is, even though it sounds so insignificant when I write about it! The same goes for, when brushing his teeth, he is now able to tip his head back a little bit while rinsing his mouth. Also something we've noticed him doing recently. The other night he was sitting on the edge of the bed and was able to take off his shirts without assistance. He can now enjoy a cup of coffee! All good stuff.
A few weeks ago he had appointments with his neurologist (Dr. Selwa) and PM&R doctor (Dr. Eckner). Dr. Selwa commented that she does little for us except write a prescription, but we always feel reassured when we leave her office. Dr. Eckner was quite pleased at the quality of Steve's walking (with his walker) in his stocking feet. I ran out the next day for different shoes - a little tighter and lightweight - we'll see if this helps him. He says they feel better. Rob is also playing with the height of the arm supports on his walker, and hopes to take him walking on the high school track on nice days. Steve also had an eye exam at the place he's gone to for years. It was good to see the people there, and they were wonderful with him. The report is that there's no change in his prescription, although there are some issues. His left eye seems the same, but his right has problems that can't be corrected with a lens adjustment. Their guess is that the fibers that connect the optic nerve to the brain have been traumatized in that eye. Another case of "time will tell." They also mentioned a field of vision test, which we have scheduled for later this month. It will give all of us a better idea of where and what Steve sees clearly, and where the problems are. The doctors at the hospital mentioned this test when he was discharged, but didn't feel he was responsive enough at that time to take it. Now he is, and we hope it will provide some good information.
Grams, Aunt Gail, Steve, and I went to the casino a couple weeks ago. Such fun! Steve played a slot machine with a lobster theme (Carl!), slot machine poker, and slot machine black jack. A good day. We also went to a U of M/Western Michigan baseball game the other day to see our good friend Timmy play for Western. It was a strange feeling to be cheering for the "bad guys" but we survived and it was a lot of fun! At this moment, three of Steve's friends are here watching the Red Wings game with him. Good times.
We continue to go to the gym twice each week. It often takes several hours to use just a few machines, but we try to let Steve set the pace. He also decides on how much weight to use, and how many sets/reps to do. We have noticed good things happening with his left arm (better able to straighten it out) and left hand (better grip) when he uses the machines there. His OT therapist, Julianne, has him wearing a device to straighten out his elbow, as well as a hand brace at night. I still think about the day we were jumping up and down because he moved two fingers. More good stuff!
The main issues with Steve at this time are keeping his head up and multi-tasking. For some reason it is more comfortable for Steve to sit with his head down at about 90 degrees to his body. This is affecting both PT (walking) and OT as well as Speech (coordinating taking a breath with voicing). Julianne has decided to use some medical tape along the back of Steve's neck and down his back to provide some stimulus when his head is not up. Hopefully this will help make holding his head up an automatic response. When Steve's head is properly positioned, the sky is the limit so to speak.(Please see Robs' video).
We now use his feeding tube only for water. Nights are so much quieter now! No more machine sounds and alarms. He is doing a wonderful job eating. I usually feed him dinner, which allows larger bites and faster eating. He is, of course, capable of feeding himself, but life is easier if he spends less time on meals. This has become more important recently, since his therapy days have become longer. Our insurance company is encouraging this in order to maximize our benefits, the therapists want to spend more time with him, and we saw the progress he made while in the hospital with therapy all day long. All good reasons! Mornings are a little tricky, but with help from Grams we're making it work.
He's making good use of his Dynavox machine, and even had a phone "conversation" with Beth the other day! Short and slow, but a nice thing to see. In case you don't have it, his phone number is 248-770-6092. He's not ready to talk/Dynavox yet, but does text if you'd like to communicate with him in that way. He also checks his email a couple times each week. Please know how much he enjoys hearing from you, even if he doesn't respond (I think due to vision issues). His email address is stevepercha@gmail.com.
A couple nights ago I helped Steve into bed and told him I'd be right back with some things we needed. He said, "I'll be right here!" and smiled. I helped him wash his face, but was still laughing about his earlier comment, and said, "What would I do without you to make me laugh?" He said, "What would I do without you to wash my face with ridiculously hot wash cloths?" Always nice to know that his humor is still there! Plus he used a great voice for that conversation, which is always wonderful to hear.
The Great Uncle Dave is planning a golf outing for Steve (please see the post before this one). I have to tell you that I was a little hesitant about this at first. We have been blessed with so much support from so many people in so many ways. I was feeling a little worried and greedy about having another fundraiser. But the reality is that there are many things (equipment, etc.) that could help Steve as he recovers. Also, there's a chance that insurance benefits for his therapy will be limited. The other day I looked at pictures from last year's outing, and remembered the mental boost that day gave to him. I thought about the fact that we had to rent a van to transport him in a wheelchair and that he couldn't eat or drink anything that day. So, thanks to Uncle Dave and everyone else who is working on this event. It will be a wonderful celebration of the progress Steve has made.
I hope life is good for all of you, and that you're enjoying this beautiful weather. Take care of yourselves and each other! Thanks for everything.
Love,
Linda
Sunday, May 17, 2009
Tuesday, May 5, 2009
2nd Annual Golf Outing
A wonderful Tuesday to everyone,
I would like to take a moment of your day to share with you details of an upcoming event. As most know, last year around this time I invited each of you to take part in a golf outing to celebrate a young man's courage. The response was overwhelming to say the least. Well I am pleased to announce that this year we are going to do it all over again.
For those of you who wish to take part in the continuing celebration of Steve's recovery, and once again step forward to remind Steve what his courage and determination means to you, well then now is the time. The 2nd Annual Steve Percha Golf Outing is officially underway. Same format and location as last year, the details are as follows
Date: June 27, 2009
Time: Registration at 7:30 AM, shotgun start at 9:00 AM
Where: Hartland Glen Golf Course - Hartland Michigan
Cost: $65.00 per person, $260.00 for a team
Contests, contests and more contests
But hurry – you’ll need to register by June 14th
Copies of the registration form can be obtained by emailing me at perk11435@yahoo.com.
Hole Sponsorship is always available, even if you or your organization are unable to play.
I hope to see you all there and together let us once again show what Steve means to all of us.
Thank you,
Dave Perkins
I would like to take a moment of your day to share with you details of an upcoming event. As most know, last year around this time I invited each of you to take part in a golf outing to celebrate a young man's courage. The response was overwhelming to say the least. Well I am pleased to announce that this year we are going to do it all over again.
For those of you who wish to take part in the continuing celebration of Steve's recovery, and once again step forward to remind Steve what his courage and determination means to you, well then now is the time. The 2nd Annual Steve Percha Golf Outing is officially underway. Same format and location as last year, the details are as follows
Date: June 27, 2009
Time: Registration at 7:30 AM, shotgun start at 9:00 AM
Where: Hartland Glen Golf Course - Hartland Michigan
Cost: $65.00 per person, $260.00 for a team
Contests, contests and more contests
But hurry – you’ll need to register by June 14th
Copies of the registration form can be obtained by emailing me at perk11435@yahoo.com.
Hole Sponsorship is always available, even if you or your organization are unable to play.
I hope to see you all there and together let us once again show what Steve means to all of us.
Thank you,
Dave Perkins
Wednesday, April 1, 2009
Update #107 from Linda
Hello! I hope life is good for all of you. Have a few things on my mind...
First of all, Steve's birthday celebrations. Those were important days for Steve and so many others. Last year I remember being in his room in Maryland and a group of nurses came in to sing "Happy Birthday" to him. At the end one of the nurses added "and many more!" Things were so uncertain at that time, but I remember saying "That is our plan." This year he had fun, food, visitors, etc. etc. and it was such a reminder of how far he has come. I wish I had time to write notes to all who participated in those days. There were so many people who worked so hard to make them happen, people who visited from near and far, people who brought food and gifts, people who sent cards and notes. Please know how important and valued your efforts are. It really is impossible to put it into words. We've attached a few pictures taken at those celebrations.
First of all, Steve's birthday celebrations. Those were important days for Steve and so many others. Last year I remember being in his room in Maryland and a group of nurses came in to sing "Happy Birthday" to him. At the end one of the nurses added "and many more!" Things were so uncertain at that time, but I remember saying "That is our plan." This year he had fun, food, visitors, etc. etc. and it was such a reminder of how far he has come. I wish I had time to write notes to all who participated in those days. There were so many people who worked so hard to make them happen, people who visited from near and far, people who brought food and gifts, people who sent cards and notes. Please know how important and valued your efforts are. It really is impossible to put it into words. We've attached a few pictures taken at those celebrations.
We recently had a change in our insurance, which about sent us all into heart failure. But then many people stepped up to the challenge of helping us figure things out. I'm talking about people from my employer, union, insurance company, rehab people, and doctors. In the end it all worked out because people were willing to go the extra mile. Thank you all.
Our home modifications are rolling along thanks to our friend Les and others. I'm sure this job is a bit of a nightmare for them...paperwork, scheduling, etc. But in the end we'll have two very important things - a safe entrance from our garage to our house, and a bathroom that's accessible to Steve. Huge things. Blessings to all who have been involved in this project. And a huge thanks to my mom, who has been here every day to keep the dog under control and keep Steve company, among many other things. We truly couldn't have made this happen without you, Mom!
We met with nutritionists and evaluated what Steve eats and drinks, vitamins, and takes through his feeding tube. They helped us put it all together and add some supplements that he was lacking, although there weren't many. He still needs the tube for water, as thin liquids are something he struggles with, and he needs lots of water. But our goal is to get him off the tube as far as feeding goes. We/He will have a party on that day! We constantly try different things with amounts and timing of tube feeding/water to come up with the best plan.
Therapy is rolling along. We are discussing ways in which to maximize the therapy he receives on days he is there (3 days per week). The challenge is that it's a long drive and daily routines (dressing, eating, etc.) take a very long time, and there are just so many hours in a day! But we are all committed to making this work. We continue to go to the gym twice each week...Tuesdays and one day each weekend. If anyone ever wants to come along to cheer Steve on, please give us a call! We consider the use of this gym such a huge blessing in Steve's life.
We are always looking for new ideas. For example the other day I ran into Steve's fourth grade teacher, and she told me about a type of alternative treatment for TBI her brother (a doctor) is involved with. We run everything by his doctors, but please let us know if you have any thoughts or suggestions!
There are so many unsung heroes involved in helping Steve recover. My fear is that, if I tried to make a list I would forget someone, and would feel terrible about that. I hope you know who you are. So often we sit here completely stunned by kind things people do for all of us. You just can't imagine how many good people there are in the world, doing things for others without looking for any recognition or thanks. But thank you.
The Dynavox ("talking machine") has turned out to be a very positive thing. There was a battery problem, but a new one arrived yesterday, so use of this device should now be easier. One of the techniques they're now using in Speech is to have Steve "mouth" everything he says even if there is no voice. We are getting pretty good at lip reading! They also just started having him hum before speaking to help with voice. It's so reassuring to us to have therapists, Speech and others, who are constantly trying new things.
I won't deny that we have scary, frustrating moments. But good things happen every day, and we are so thankful for that. Thanks for continuing to keep Steve in your thoughts and prayers. It means so much.
Our home modifications are rolling along thanks to our friend Les and others. I'm sure this job is a bit of a nightmare for them...paperwork, scheduling, etc. But in the end we'll have two very important things - a safe entrance from our garage to our house, and a bathroom that's accessible to Steve. Huge things. Blessings to all who have been involved in this project. And a huge thanks to my mom, who has been here every day to keep the dog under control and keep Steve company, among many other things. We truly couldn't have made this happen without you, Mom!
We met with nutritionists and evaluated what Steve eats and drinks, vitamins, and takes through his feeding tube. They helped us put it all together and add some supplements that he was lacking, although there weren't many. He still needs the tube for water, as thin liquids are something he struggles with, and he needs lots of water. But our goal is to get him off the tube as far as feeding goes. We/He will have a party on that day! We constantly try different things with amounts and timing of tube feeding/water to come up with the best plan.
Therapy is rolling along. We are discussing ways in which to maximize the therapy he receives on days he is there (3 days per week). The challenge is that it's a long drive and daily routines (dressing, eating, etc.) take a very long time, and there are just so many hours in a day! But we are all committed to making this work. We continue to go to the gym twice each week...Tuesdays and one day each weekend. If anyone ever wants to come along to cheer Steve on, please give us a call! We consider the use of this gym such a huge blessing in Steve's life.
We are always looking for new ideas. For example the other day I ran into Steve's fourth grade teacher, and she told me about a type of alternative treatment for TBI her brother (a doctor) is involved with. We run everything by his doctors, but please let us know if you have any thoughts or suggestions!
There are so many unsung heroes involved in helping Steve recover. My fear is that, if I tried to make a list I would forget someone, and would feel terrible about that. I hope you know who you are. So often we sit here completely stunned by kind things people do for all of us. You just can't imagine how many good people there are in the world, doing things for others without looking for any recognition or thanks. But thank you.
The Dynavox ("talking machine") has turned out to be a very positive thing. There was a battery problem, but a new one arrived yesterday, so use of this device should now be easier. One of the techniques they're now using in Speech is to have Steve "mouth" everything he says even if there is no voice. We are getting pretty good at lip reading! They also just started having him hum before speaking to help with voice. It's so reassuring to us to have therapists, Speech and others, who are constantly trying new things.
I won't deny that we have scary, frustrating moments. But good things happen every day, and we are so thankful for that. Thanks for continuing to keep Steve in your thoughts and prayers. It means so much.
Love,
Linda
"This is Rob and I approve this message"
Monday, March 16, 2009
Update #106 from Rob
Hello to all of you that read this blog. Hope life is good for you! Linda is getting some sleep so I decided to update this time.
As you can probably tell by the span of time between updates, things are happening slowly at this point in Steve's journey. But they are still moving in a positive direction.
Steve seems to voice in longer sentences when at home in a relaxed environment. Especially when he first wakes up. Some days are better than others and we hope we can keep stringing more good days together. Steve is getting used to the Dynavox machine and can carry on a conversation well. They say this will help with voicing also.....time will tell.
Steve definitely has more movement in the left arm and hand and we re working in OT to get him to fine tune the fingers and thumb so he can pick up small objects and ....... play the guitar his loving sister got him for his birthday!
We have found in PT that Steve seems to be better at walking with stand-by assist rather than with the walker. His weight gain however is hindering this progression and Linda and I are working to figure out the best plan for nutrition without putting on the pounds.
He had a wonderful birthday. We celebrated one weekend at our house and had a great time. The following weekend he celebrated with a crowd of friends at a restaurant in Ann Arbor, and then went with many of them to a Red Wings game. People came from all over the state and country to see him. I hear this is evidenced by pictures on Facebook. To all of you who sent cards and messages, brought food and gifts, and visited...thank you from the bottom of all our hearts. We've said this so many times, but the support he gets from friends and relatives is beyond amazing and so important to his motivation and recovery. We know this just by our own observations, and it's backed up by the medical people.
Please continue to think of Steve when you can.
Thank You all,
Rob
As you can probably tell by the span of time between updates, things are happening slowly at this point in Steve's journey. But they are still moving in a positive direction.
Steve seems to voice in longer sentences when at home in a relaxed environment. Especially when he first wakes up. Some days are better than others and we hope we can keep stringing more good days together. Steve is getting used to the Dynavox machine and can carry on a conversation well. They say this will help with voicing also.....time will tell.
Steve definitely has more movement in the left arm and hand and we re working in OT to get him to fine tune the fingers and thumb so he can pick up small objects and ....... play the guitar his loving sister got him for his birthday!
We have found in PT that Steve seems to be better at walking with stand-by assist rather than with the walker. His weight gain however is hindering this progression and Linda and I are working to figure out the best plan for nutrition without putting on the pounds.
He had a wonderful birthday. We celebrated one weekend at our house and had a great time. The following weekend he celebrated with a crowd of friends at a restaurant in Ann Arbor, and then went with many of them to a Red Wings game. People came from all over the state and country to see him. I hear this is evidenced by pictures on Facebook. To all of you who sent cards and messages, brought food and gifts, and visited...thank you from the bottom of all our hearts. We've said this so many times, but the support he gets from friends and relatives is beyond amazing and so important to his motivation and recovery. We know this just by our own observations, and it's backed up by the medical people.
Please continue to think of Steve when you can.
Thank You all,
Rob
Wednesday, February 25, 2009
Birthday
Hi! Just a reminder about Steve's birthday open house (details on my previous post).
No matter how you know him or how well you know him, the fact that you take the time to read this blog means that you are an important part of his life and play an important part in his recovery. We would love to have you stop by. If you wonder what to expect, please know that Steve is "all there" inside...personality, memory, humor, intelligence, etc. He can't walk unassisted or talk much, but he can communicate and it's easy to visit with him.
I hope that life is good for all of you. As always, thanks for everything!
Love,
Linda
No matter how you know him or how well you know him, the fact that you take the time to read this blog means that you are an important part of his life and play an important part in his recovery. We would love to have you stop by. If you wonder what to expect, please know that Steve is "all there" inside...personality, memory, humor, intelligence, etc. He can't walk unassisted or talk much, but he can communicate and it's easy to visit with him.
I hope that life is good for all of you. As always, thanks for everything!
Love,
Linda
Tuesday, February 17, 2009
Update #105 from Linda
Hello, everyone! Steve's 24th birthday is coming up (March 3rd). Last year he spent it at Suburban Hospital in a coma while the nurses sang to him and everyone else ate his cake! This year we'd like to invite everyone to our house to celebrate with him. There's no need to RSVP...just stop by if you'd like to:
Saturday, February 28th 2-10 PM
Sunday, March 1st 2-8 PM
Our address is 1629 Commerce Pines Dr., Walled Lake, MI 48390
248-624-3217 (home)
248-568-6091 (Linda - cell)
248-568-6092 (Rob - cell)
We'll have food, so come hungry! We look forward to seeing you :)
Love,
Linda and Rob
Saturday, February 28th 2-10 PM
Sunday, March 1st 2-8 PM
Our address is 1629 Commerce Pines Dr., Walled Lake, MI 48390
248-624-3217 (home)
248-568-6091 (Linda - cell)
248-568-6092 (Rob - cell)
We'll have food, so come hungry! We look forward to seeing you :)
Love,
Linda and Rob
Friday, February 6, 2009
Update #104 from Rob and Linda
Hello everyone,
Almost 1 month since the last post.....sorry about that.
As we approach one year since the accident, Linda and I are reminded of a statement buy one of Steve's' caregivers in Bethesda. " This is a marathon not a sprint". How true this is!!
Steve seemed to be making faster progress when "in patient" and we were concerned that current progress was actually going backward somewhat. We have videos that show Steve walking unassisted between the parallel bars as if he was going to walk out of them. We had not seen that as an out patient.
You question what has happened. We ask, is it the fact that he was getting more hours of OT and PT per week while in the hospital, and now is getting less? So we started taking Steve to the gym 2 days a week to supplement his therapy. We ask should we be talking to his doctors about new meds? All sorts of things go through your mind. Believe me, you question everything, from your relationship with your God, to how late your spouse lets your son stay up at night!
I think our concerns were also showing, through us, to Steve's' current therapists also.
Anyway after I showed our in-patient videos to Andy, Steve's' PT therapist, he promptly put Steve in the parallel bars and lo-and-behold, Steve walked through them like before!!! HE HASN'T LOST ANYTHING ! It is just that the current things we are doing in PT don't show as dramatically and therefore can work on your patience.
Ditto for OT, just when you think things are leveling out, something great happens! Please see the video. Steve has always shown "3" with his last three fingers. Notice what hand he uses! We were told in Bethesda that this hand and arm might never work again.
Speech has found that reclining Steve works better and much more voicing is now happening. Steve has a swallow study this Friday (TODAY!) and we hope that it will go well. As always.....thoughts and prayers please!
This is Linda...I'm not at therapy too often, so sometimes have a different perspective than Rob does. I spent 2 hours there on Wednesday, and in that time I witnessed improved swallowing during speech, heard the speech therapist comment on the many improvements, watched Steve walk more confidently with his walker (which usually gives me heart failure when I try to walk with him, since he's so much taller than I am and I can't see where we're going), heard him tell a long story to his OT therapist, and watched as he raised his left arm five times to the count of 10 while laying on a mat in OT (with an elbow support on). All wonderful, amazing stuff!
It is hard to believe one year has gone by. When you think, at one time, we were happy when we got an eye blink or a squeeze of our hand, what has happened up until now is truly a miracle and it will continue.
Thanks for following the blog!
Rob and Linda
Almost 1 month since the last post.....sorry about that.
As we approach one year since the accident, Linda and I are reminded of a statement buy one of Steve's' caregivers in Bethesda. " This is a marathon not a sprint". How true this is!!
Steve seemed to be making faster progress when "in patient" and we were concerned that current progress was actually going backward somewhat. We have videos that show Steve walking unassisted between the parallel bars as if he was going to walk out of them. We had not seen that as an out patient.
You question what has happened. We ask, is it the fact that he was getting more hours of OT and PT per week while in the hospital, and now is getting less? So we started taking Steve to the gym 2 days a week to supplement his therapy. We ask should we be talking to his doctors about new meds? All sorts of things go through your mind. Believe me, you question everything, from your relationship with your God, to how late your spouse lets your son stay up at night!
I think our concerns were also showing, through us, to Steve's' current therapists also.
Anyway after I showed our in-patient videos to Andy, Steve's' PT therapist, he promptly put Steve in the parallel bars and lo-and-behold, Steve walked through them like before!!! HE HASN'T LOST ANYTHING ! It is just that the current things we are doing in PT don't show as dramatically and therefore can work on your patience.
Ditto for OT, just when you think things are leveling out, something great happens! Please see the video. Steve has always shown "3" with his last three fingers. Notice what hand he uses! We were told in Bethesda that this hand and arm might never work again.
Speech has found that reclining Steve works better and much more voicing is now happening. Steve has a swallow study this Friday (TODAY!) and we hope that it will go well. As always.....thoughts and prayers please!
This is Linda...I'm not at therapy too often, so sometimes have a different perspective than Rob does. I spent 2 hours there on Wednesday, and in that time I witnessed improved swallowing during speech, heard the speech therapist comment on the many improvements, watched Steve walk more confidently with his walker (which usually gives me heart failure when I try to walk with him, since he's so much taller than I am and I can't see where we're going), heard him tell a long story to his OT therapist, and watched as he raised his left arm five times to the count of 10 while laying on a mat in OT (with an elbow support on). All wonderful, amazing stuff!
It is hard to believe one year has gone by. When you think, at one time, we were happy when we got an eye blink or a squeeze of our hand, what has happened up until now is truly a miracle and it will continue.
Thanks for following the blog!
Rob and Linda
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