Hi! I hope all is well!
This week Steve started horseback riding lessons. One of his doctors said, "Great!" and the other just about had a heart attack at the thought of him on a horse! Anything he tries makes us a little nervous, but that's just life. In any case, his instructor is very kind and capable. She and two other people led the horse (BIG) and stood on either side of Steve helping him keep his balance. They'd walk a little ways then stop so he could adjust his posture, etc. He rode with just a blanket on the horse and a handle that was strapped around it. Used lots of muscles that hadn't been used in ages, and was pretty tired after a half hour, but did fine. At the end they helped him slide off and land on his feet, which was pretty amazing. A good experience. We'll be going once each week.
After sleeping on real beds in Manistee and Muskegon, we realized that Steve's hospital bed was keeping him from moving around much, and he certainly can (and should) do that now. So we got him a queen sized bed and he sleeps so much better. We still have some "bugs" to work out, like finding a footboard that he can push against with his feet that's high and sturdy enough for him, and probably getting some guard rails for the sides. But we're managing right now and feeling like we should have done this a long time ago.
We are always looking for ways to help Steve communicate. His ability to text is pretty startling to many people...he's very quick at it, and the language he uses is just like the pre-injury Steve. So, to his friends, please keep in touch with him in this way! Today we're going to the Apple store to check out the I-Phone and I-Touch (I think that's what they're called) which have a feature that allows you to type then hit a "speak" button. Wish me well...I'm not the most technical person! He has a speaking device that we got several months ago, but it's large and he rarely uses it.
Tomorrow we visit a new rehab facility. Please cross your fingers. The admissions person and I had such a nice conversation...she understands our position as far as insurance, and the fact that we're looking for some guidance and expertise. This is a place that our new doctor has a connection with and that is the reason they're willing to see us. They're not sure how much therapy time they can offer us, but this is a good first step and we're thankful for it.
I hope life is good for all of you. Take care!
Love,
Linda
Thursday, August 27, 2009
Sunday, August 16, 2009
Update #110 from Linda
Hello! Thanks for reading this despite the fact that it takes us ages to update! So many things are going on...
The day before Steve's golf outing we attended a golf event and met a young man (who has a TBI from a car accident) and his family. They are a little further along in this process, and have been a good source of information and support to us, for which we are thankful. One thing they mentioned was therapeutic horseback riding, so we checked that out and Steve starts riding next week. He'll have private lessons at first, then be part of a small group of riders as he progresses. We are really impressed with the facility he'll be riding at, as well as his instructor. Things like this are not covered by insurance, so we'll be using some of the funds from Steve's golf outing to finance it. Thank you!
The golf outing was beyond wonderful. We just cannot adequately express how much this support means to all of us. I hope you know how thankful we are.
One exciting thing that happened at the outing was that Steve drove a golf cart. He didn't think it was a big deal, but it sure was to us! A few days later I took him to a golf course he used to play and we rented a cart and drove around. I figured he drove at least two miles, and only scared me half to death a few times!
We have been discharged from the therapy he has attended since last fall. As it turned out, it happened quite quickly and we have little contact with his therapy team. That was a surprise to us, but we're moving on and looking for other options. One thing they recommended was getting a second opinion, and we were a little lost in regards to that. But we met a couple families who recommended a doctor. It turned out that he couldn't take Steve as a patient, but his partner could. We have had two appointments with her and walked out of her office feeling very encouraged. She is trying to work things out with our insurance company and a TBI facility she's connected with to obtain additional therapy for Steve, despite the fact that we are technically "out" of therapy days. Please cross your fingers...this would be huge. She's also checking with a group about having speech therapy at home, but nothing definite yet. We asked her about "neurofeedback" which is a type of non-traditional therapy, and she has seen good things happen with this. She's given us the name of a group involved in this, and we'll be calling them tomorrow. Apparently some of this is covered by insurance, but part is not. Thank you, once again, golf outing supporters! We also discussed swimming as therapy, and the challenges of doing that with a feeding tube. She has no problems with Steve swimming in a chlorinated pool, so we'll be checking into that, too.
A big thank you to our cousins Ken and Kathy who invited us to their "cottage" on Lake Michigan, and we took Steve there last month for a few days. There were about 25 steps to the beach, and he handled them with little problem. That was the first time he had his feet in Lake Michigan in a long time. Wonderful therapy! Then my mom (thanks, Grams!) rented a place in Muskegon, and we were able to take Steve there. That's his favorite place on earth, and he was so glad to be there. There were 75 steps to that beach, and we got down there twice. He did great on the steps, and on the long walk to the water, although Rob and I needed a nap afterwards! One of the last days there we put chairs in the water and got soaked to our shoulders. Such fun! He also drove go-carts at a place he's gone to for years. We didn't know if he could do it, and getting in and out of them was tricky, but once in them he did fine driving. Quite a sight! One day the wonderful Beth and Miranda took him to Grand Haven...I know he enjoyed some time with them and away from us! Another day we went to the beach at Grand Haven because they have chairs with big tires that you can push around on the sand. I got the bright idea of taking it into the water...thank goodness Gail and Beth were there to help get it out!
Steve has lots of issues, and we acknowledge that. But we see progress all the time, and know there's lots more to come. Yesterday he was on his computer and I could see how much his vision issues have improved just by watching him use it. He still eats very slowly, but has much less trouble with TMJ, which is a blessing. He's also able to drink more and thinner liquids with no problems. Tonight we met Beth for dinner, and the four of us sat in a restaurant. We handed Steve a menu, and he looked it over and decided what to order on his own. That has not happened in a long time (due to vision issues), and it felt great. We have been able to eliminate one med, and reduce another. We'll spend the next month reducing that further, then add a med that might help with response time (in speech). He did have a seizure (milder than the other two) several weeks ago during the time that his meds were being adjusted, and it was probably due to that. So we have to be very careful to make changes slowly.
As always, we send our thanks to you for reading this and sending energy and prayers Steve's way. Your friendship and support is so valued and appreciated by all of us.
We'll try to do a better job of keeping this up to date! Take care!
Love,
Linda
The day before Steve's golf outing we attended a golf event and met a young man (who has a TBI from a car accident) and his family. They are a little further along in this process, and have been a good source of information and support to us, for which we are thankful. One thing they mentioned was therapeutic horseback riding, so we checked that out and Steve starts riding next week. He'll have private lessons at first, then be part of a small group of riders as he progresses. We are really impressed with the facility he'll be riding at, as well as his instructor. Things like this are not covered by insurance, so we'll be using some of the funds from Steve's golf outing to finance it. Thank you!
The golf outing was beyond wonderful. We just cannot adequately express how much this support means to all of us. I hope you know how thankful we are.
One exciting thing that happened at the outing was that Steve drove a golf cart. He didn't think it was a big deal, but it sure was to us! A few days later I took him to a golf course he used to play and we rented a cart and drove around. I figured he drove at least two miles, and only scared me half to death a few times!
We have been discharged from the therapy he has attended since last fall. As it turned out, it happened quite quickly and we have little contact with his therapy team. That was a surprise to us, but we're moving on and looking for other options. One thing they recommended was getting a second opinion, and we were a little lost in regards to that. But we met a couple families who recommended a doctor. It turned out that he couldn't take Steve as a patient, but his partner could. We have had two appointments with her and walked out of her office feeling very encouraged. She is trying to work things out with our insurance company and a TBI facility she's connected with to obtain additional therapy for Steve, despite the fact that we are technically "out" of therapy days. Please cross your fingers...this would be huge. She's also checking with a group about having speech therapy at home, but nothing definite yet. We asked her about "neurofeedback" which is a type of non-traditional therapy, and she has seen good things happen with this. She's given us the name of a group involved in this, and we'll be calling them tomorrow. Apparently some of this is covered by insurance, but part is not. Thank you, once again, golf outing supporters! We also discussed swimming as therapy, and the challenges of doing that with a feeding tube. She has no problems with Steve swimming in a chlorinated pool, so we'll be checking into that, too.
A big thank you to our cousins Ken and Kathy who invited us to their "cottage" on Lake Michigan, and we took Steve there last month for a few days. There were about 25 steps to the beach, and he handled them with little problem. That was the first time he had his feet in Lake Michigan in a long time. Wonderful therapy! Then my mom (thanks, Grams!) rented a place in Muskegon, and we were able to take Steve there. That's his favorite place on earth, and he was so glad to be there. There were 75 steps to that beach, and we got down there twice. He did great on the steps, and on the long walk to the water, although Rob and I needed a nap afterwards! One of the last days there we put chairs in the water and got soaked to our shoulders. Such fun! He also drove go-carts at a place he's gone to for years. We didn't know if he could do it, and getting in and out of them was tricky, but once in them he did fine driving. Quite a sight! One day the wonderful Beth and Miranda took him to Grand Haven...I know he enjoyed some time with them and away from us! Another day we went to the beach at Grand Haven because they have chairs with big tires that you can push around on the sand. I got the bright idea of taking it into the water...thank goodness Gail and Beth were there to help get it out!
Steve has lots of issues, and we acknowledge that. But we see progress all the time, and know there's lots more to come. Yesterday he was on his computer and I could see how much his vision issues have improved just by watching him use it. He still eats very slowly, but has much less trouble with TMJ, which is a blessing. He's also able to drink more and thinner liquids with no problems. Tonight we met Beth for dinner, and the four of us sat in a restaurant. We handed Steve a menu, and he looked it over and decided what to order on his own. That has not happened in a long time (due to vision issues), and it felt great. We have been able to eliminate one med, and reduce another. We'll spend the next month reducing that further, then add a med that might help with response time (in speech). He did have a seizure (milder than the other two) several weeks ago during the time that his meds were being adjusted, and it was probably due to that. So we have to be very careful to make changes slowly.
As always, we send our thanks to you for reading this and sending energy and prayers Steve's way. Your friendship and support is so valued and appreciated by all of us.
We'll try to do a better job of keeping this up to date! Take care!
Love,
Linda
Saturday, July 4, 2009
Golf Outing
Dear Friends,
On June 27th you helped celebrate Steve’s progress by attending, participating in, working on, and donating (financially and emotionally) to his golf outing. It was a wonderful day filled with friends, beautiful weather, friendly competition, and contests.
This is what it also was: A day on which Steve was reminded that there are so many people out there who love and care about him, and celebrate his many victories. People who recognize that he has come a long, long way but has many things yet to accomplish, and sacrifice their time and provide financial support to help make that happen. Put yourself in his shoes for a minute, and think about the impact this would have on your life and your hope and your determination. It’s huge. Beyond huge. We just cannot thank you enough.
It was also a day when we were reminded once again to never be afraid to try new things, or to stop thinking of challenges to put before him. The first picture was taken of the four of us early in the day. A few minutes later I summoned up every ounce of courage I had and suggested that he drive, knowing that I could always pull his foot off the accelerator if we got into trouble. There were times when he had to be reminded to watch out for things, and turns where it was hard to maneuver the steering wheel with one hand, but the fact that he could do this was shocking and wonderful. We got in one situation where we needed to go in reverse, so he adjusted the gear and turned around to look behind us as he backed down the path. We just could not stop smiling. Here’s a picture taken shortly after the first, when we encountered Uncle Dave and Miranda. “A picture is worth a thousand words!”
How can we thank you, old and new friends, for the part you have played in Steve’s recovery? There really are no words. As we have said before, being on the receiving end of something like Steve’s Scramble changes your life.
Please know that our appreciation is from the bottom of our hearts. We will never forget that day, or stop being amazed by and thankful for the support you have shown to our family.
Love,
The Percha Family
On June 27th you helped celebrate Steve’s progress by attending, participating in, working on, and donating (financially and emotionally) to his golf outing. It was a wonderful day filled with friends, beautiful weather, friendly competition, and contests.
This is what it also was: A day on which Steve was reminded that there are so many people out there who love and care about him, and celebrate his many victories. People who recognize that he has come a long, long way but has many things yet to accomplish, and sacrifice their time and provide financial support to help make that happen. Put yourself in his shoes for a minute, and think about the impact this would have on your life and your hope and your determination. It’s huge. Beyond huge. We just cannot thank you enough.
It was also a day when we were reminded once again to never be afraid to try new things, or to stop thinking of challenges to put before him. The first picture was taken of the four of us early in the day. A few minutes later I summoned up every ounce of courage I had and suggested that he drive, knowing that I could always pull his foot off the accelerator if we got into trouble. There were times when he had to be reminded to watch out for things, and turns where it was hard to maneuver the steering wheel with one hand, but the fact that he could do this was shocking and wonderful. We got in one situation where we needed to go in reverse, so he adjusted the gear and turned around to look behind us as he backed down the path. We just could not stop smiling. Here’s a picture taken shortly after the first, when we encountered Uncle Dave and Miranda. “A picture is worth a thousand words!”
How can we thank you, old and new friends, for the part you have played in Steve’s recovery? There really are no words. As we have said before, being on the receiving end of something like Steve’s Scramble changes your life.
Please know that our appreciation is from the bottom of our hearts. We will never forget that day, or stop being amazed by and thankful for the support you have shown to our family.
Love,
The Percha Family
Here are some additional pictures from Steve's Scramble:
Steve's Golf Outing Pictures
Thursday, June 18, 2009
update #109 from Linda
Hello!
So the latest news is that Steve is in the process of being discharged from the intense rehab program he has been in. We are being trained for home therapy, and we'll check in with the rehab team a couple times each month. The therapists feel that, while they see some improvements, he has reached a plateau when it comes to "functional improvements." To tell you the truth, it took us a couple weeks to wrap our head around that one, and probably haven't yet. But as the days have gone by, and we've had conversations with the medical people, we have come to an understanding about this decision. Everyone involved admits that they have no idea how far Steve will progress because every case is different, he often does better with some tasks at home, we have lots of things on our summer schedule, this will give us the time to try new things that we've wanted to try, people plateau then once again start progressing, etc. etc. We also have the names of a couple doctors and programs that people have recommended that we plan to check out. The other night I told Steve that this would require a big commitment from all of us to make it work but I thought it was an opportunity for new and good things to happen. He said, "I like the way you think." We worried that this decision would discourage him, but that doesn't seem to be the case. Recently I told him there are people who think he should be depressed and he just rolled his eyes. Have no idea where he finds this strength but am so thankful that he has!
His left arm has really been coming along, especially during the past couple of weeks. They no longer have to use a deltoid aid (a contraption that supports his arm and shoulder while doing OT tasks). He has the strength to lift his arm (slowly, awkwardly) and pick up pegs, cones, etc. (slowly, awkwardly), and it is a wonderful thing to see. At home he turns light switches and water faucets on and off with it. He doesn't say much, but you can tell how happy he is to see this happening. That has always been one of his top goals.
I've been doing some checking around and found a place to take Steve for a lesson at a driving range. They had a one-person cart with an adjustable seat, and he leaned against it (with a seat belt on) and hit a bucket of balls just using his right arm/hand. At first he couldn't connect with anything, but you could see him analyzing the situation and then start hitting pretty much every ball. Nothing went very far (maybe 10 feet or so) and he was very off-balance, but it was so nice to see him in that environment. I asked him about it later and he said it was good to be on a driving range again, but the instructor was useless! I laughed because he really was, but at least Steve got to use their cart.
Voicing is one of those things that's good at times and non-existent at others. Today in Speech he was reading pairs of words (vat, fat; van, fan; etc.) and he had to choose one to say and we guessed what he was saying. Did a great job. He was also asked to name two things with handles, two sweet things, two sour things, etc. I laughed at his answer for two sour things - a lemon and your mood in a traffic jam!
Another funny story...we were invited to visit friends at their lake front home on Memorial Day (an absolutely wonderful day for all of us) and a pontoon boat ride was planned. Rob and I walked with Steve across the lawn and down a long dock to where the boat was. Rob was in front walking backwards, then Steve, then me. Too much combined weight! As we walked the dock started to sink. We just kept going, kept our balance, and didn't fall in the lake (and got Steve safely on the boat), but it was quite a feeling and quite a sight!
Plans are rolling along for the golf outing. Being on the receiving end of something like this changes your life. Can't find the words. Today in the car I told Steve some of the latest details, and reminded him once again that there are so many people out there who are on his team. Thumbs up and a big smile. He knows and is thankful, as we all are.
Thank you for continuing to read this blog and send prayers and power to Steve. This is a long journey, but we really have no doubt that the ending will be a good one! Watch for some golf outing pictures to be posted soon. Take care of yourselves and each other!
Love,
Linda
So the latest news is that Steve is in the process of being discharged from the intense rehab program he has been in. We are being trained for home therapy, and we'll check in with the rehab team a couple times each month. The therapists feel that, while they see some improvements, he has reached a plateau when it comes to "functional improvements." To tell you the truth, it took us a couple weeks to wrap our head around that one, and probably haven't yet. But as the days have gone by, and we've had conversations with the medical people, we have come to an understanding about this decision. Everyone involved admits that they have no idea how far Steve will progress because every case is different, he often does better with some tasks at home, we have lots of things on our summer schedule, this will give us the time to try new things that we've wanted to try, people plateau then once again start progressing, etc. etc. We also have the names of a couple doctors and programs that people have recommended that we plan to check out. The other night I told Steve that this would require a big commitment from all of us to make it work but I thought it was an opportunity for new and good things to happen. He said, "I like the way you think." We worried that this decision would discourage him, but that doesn't seem to be the case. Recently I told him there are people who think he should be depressed and he just rolled his eyes. Have no idea where he finds this strength but am so thankful that he has!
His left arm has really been coming along, especially during the past couple of weeks. They no longer have to use a deltoid aid (a contraption that supports his arm and shoulder while doing OT tasks). He has the strength to lift his arm (slowly, awkwardly) and pick up pegs, cones, etc. (slowly, awkwardly), and it is a wonderful thing to see. At home he turns light switches and water faucets on and off with it. He doesn't say much, but you can tell how happy he is to see this happening. That has always been one of his top goals.
I've been doing some checking around and found a place to take Steve for a lesson at a driving range. They had a one-person cart with an adjustable seat, and he leaned against it (with a seat belt on) and hit a bucket of balls just using his right arm/hand. At first he couldn't connect with anything, but you could see him analyzing the situation and then start hitting pretty much every ball. Nothing went very far (maybe 10 feet or so) and he was very off-balance, but it was so nice to see him in that environment. I asked him about it later and he said it was good to be on a driving range again, but the instructor was useless! I laughed because he really was, but at least Steve got to use their cart.
Voicing is one of those things that's good at times and non-existent at others. Today in Speech he was reading pairs of words (vat, fat; van, fan; etc.) and he had to choose one to say and we guessed what he was saying. Did a great job. He was also asked to name two things with handles, two sweet things, two sour things, etc. I laughed at his answer for two sour things - a lemon and your mood in a traffic jam!
Another funny story...we were invited to visit friends at their lake front home on Memorial Day (an absolutely wonderful day for all of us) and a pontoon boat ride was planned. Rob and I walked with Steve across the lawn and down a long dock to where the boat was. Rob was in front walking backwards, then Steve, then me. Too much combined weight! As we walked the dock started to sink. We just kept going, kept our balance, and didn't fall in the lake (and got Steve safely on the boat), but it was quite a feeling and quite a sight!
Plans are rolling along for the golf outing. Being on the receiving end of something like this changes your life. Can't find the words. Today in the car I told Steve some of the latest details, and reminded him once again that there are so many people out there who are on his team. Thumbs up and a big smile. He knows and is thankful, as we all are.
Thank you for continuing to read this blog and send prayers and power to Steve. This is a long journey, but we really have no doubt that the ending will be a good one! Watch for some golf outing pictures to be posted soon. Take care of yourselves and each other!
Love,
Linda
Sunday, May 17, 2009
Update #108 from Linda
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
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
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"
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