No excuses, we blew it, but "better late than never" ...Right?
The weeks just fly by and then you look at the calendar and another 6 have expired.
First of all , Steve and family want to wish all of you a Safe and Happy Holiday Season, and Thank You for your continual positive thoughts and prayers.
Steve's schedule has finally been decided and it is nice to get into a routine again. Steve swims on Mondays, goes to the gym and has a massage on Tuesday, to therapy on Wednesday and Friday, plays tennis with Jennie on Thursday at the gym and does horseback riding on Saturday. We also try to do another gym workout on Sundays and Beth works on the recumbent bike with him three nights each week............Then we take a long breath and do it again next week!
While his balance and walking are progressing, albeit slowly, what is really getting better is his voice and swallowing. It wasn't long ago that eliciting a response to ending a sentence would have taken 2 minutes. Now it is almost instantaneous. Spontaneous speech comes more frequently now. Steve also coughs much more, but we and therapists feel that sensation must be returning to his throat area and the cough is a response to food going down the wrong pipe so to speak. It is also more the norm to carry on a conversation as he is lying back in his bed before going to sleep.
A couple of nights ago Steve relayed a long story about things that happened on a trip to Madison WI. He was laughing out loud and said it was one of the funniest nights of his life. Thor, why do they call it Potato Ole'? We also commented on the number of socks he owns, as we have bought many in order to find the perfect fit. He said, "Like I always say, when I get through this at least I'll have a cool wardrobe!"
The time between "good" days seems to be getting shorter, but Steve's weight is making walking and standing harder to do. It is hard to believe that Steve has gained 50 pounds since his discharge form the hospital. We are analyzing his eating, but really believe lack of walking is a major factor in this. Hopefully we can get our hands on an appropriate walker and get him moving more. We also plan to put up hand rails in a long hallway in our house so that he can walk in that way. Beth has stepped up the pace on the bike, and also plans to do Pilates with him, even though he might think it's too "girlie."
Another good thing is we are almost through using the feeding tube. Steve can handle Gatorade and water and other thin liquids, and is chewing his remaining medication. We will schedule another swallow study after the first of the year.
We bought a Christmas card the other day that we think says something about each of you...
"It's a time to slow down, let go, help those who need it, love them, too...and maybe that's the way we find our peace and joy. Not by taking on the whole world all at once, but just the part that fits in our hand."
Thanks for fitting Steve in your hand. Merry Christmas!
Love,
Rob and Linda
Monday, December 21, 2009
Sunday, November 1, 2009
Update #113 from Linda and Rob
Hello! We're feeling so guilty that we haven't updated in ages. Sorry! Lots of things have been happening...
Horseback riding is proving to be a good thing (please see video). Steve now rides a horse named Rudy who is a little shorter and quicker than Malabar. His posture and ability to match Rudy's gait gets better each week. His teacher is Jessica, and she is wonderful. She has lots of stories to tell, and Steve ends up listening to her and responding to her even when he's riding, which has been fun to watch. Each week as we pay for this therapy we send a thank you to all of you who have made this possible! This would not be happening without your support.
He continues to get weekly massages in our home from Eric and Theresa, and they have developed such a wonderful relationship with Steve. He does lots of talking with them, and it's obvious that they care deeply for him, as he does for them.
Through a number of coincidences, we found our way to a new PM&R doctor who has a connection with a rehab facility that specializes in TBI. They have begun working with Steve two afternoons each week, and now have him swimming in a therapeutic pool every Monday. These people have high hopes for Steve, and we are so thankful for their expertise and encouragement!
We take Steve to the gym twice each week to work out, and he plays tennis there every Thursday with our friend Jennie. It has been so good for him in many ways, including hand/eye coordination, strengthening his arms, and exercising in a fun way that he hasn't been able to do in a long time. They also have a martial arts room with bars that he can walk along, and Rob and Jennie help him with that. Good stuff!
Beth has started coming home three evenings each week to work with Steve on the recumbent bike. It's more than just pedaling...she has him work through a routine that will get harder as time goes by. We have been really worried about his lack of cardio exercise, and are so thankful that Beth has taken on the challenge of addressing this issue.
A couple weeks ago I managed (once again!) to pull Steve's feeding tube out. The good news is that it was replaced with a different kind, which is smaller and less annoying. It also makes it possible to swim, so I guess was a good thing in the long run! We really hope to have it out before too many more months go by. His eating/drinking are getting better all the time.
We appealed to Blue Cross to increase the number of therapy days they'll pay for each year, and were turned down (despite letters from his PM&R doctor and neurologist). We're going to pursue this further, and are wondering if any of you have ideas or experience in doing this. If you do, you can communicate with us in this blog, or you can email me at lindapercha@gmail.com. We would really appreciate any thoughts or advice you might have! It's amazing to us that they'll pay for unlimited days in the hospital, but very few outpatient therapy days, despite the cost difference between the two. The other "interesting" thing we've learned is that people injured in auto accidents have opportunities for much, much more therapy than people injured in other ways. Just doesn't seem right, but that's the way it is.
Steve's friend Jamie is an OT student at Wayne State, and she just spent a couple hours here talking with and evaluating Steve. She and a group of fellow students are exploring the possibility of working with Steve, and also had a fundraiser for him. We are so excited to see what sort of plans they come up with!
We've often spoken of Steve's friends, and how amazed we are by the support they show him even as time goes by and their lives change. They visit, email, and text! No matter how they stay in touch, their presence is so important to his recovery.
We know of some people who would like to have contact with him, but maybe feel too much time has passed or feel that if they haven't been in touch before, it's not appropriate now. Please don't let that stop you. He would love to hear from you. His phone number for texting (which is a great way to communicate with him) is 248-770-6092. Thanks.
We also want to say thanks to the people who send a random note or email, or comment in this blog, just to let us know they haven't forgotten about Steve. It means so much.
We hope life is good for you. As Thanksgiving approaches, please know that we have all of you on our list of what we're thankful for.
Love,
Linda & Rob
Horseback riding is proving to be a good thing (please see video). Steve now rides a horse named Rudy who is a little shorter and quicker than Malabar. His posture and ability to match Rudy's gait gets better each week. His teacher is Jessica, and she is wonderful. She has lots of stories to tell, and Steve ends up listening to her and responding to her even when he's riding, which has been fun to watch. Each week as we pay for this therapy we send a thank you to all of you who have made this possible! This would not be happening without your support.
He continues to get weekly massages in our home from Eric and Theresa, and they have developed such a wonderful relationship with Steve. He does lots of talking with them, and it's obvious that they care deeply for him, as he does for them.
Through a number of coincidences, we found our way to a new PM&R doctor who has a connection with a rehab facility that specializes in TBI. They have begun working with Steve two afternoons each week, and now have him swimming in a therapeutic pool every Monday. These people have high hopes for Steve, and we are so thankful for their expertise and encouragement!
We take Steve to the gym twice each week to work out, and he plays tennis there every Thursday with our friend Jennie. It has been so good for him in many ways, including hand/eye coordination, strengthening his arms, and exercising in a fun way that he hasn't been able to do in a long time. They also have a martial arts room with bars that he can walk along, and Rob and Jennie help him with that. Good stuff!
Beth has started coming home three evenings each week to work with Steve on the recumbent bike. It's more than just pedaling...she has him work through a routine that will get harder as time goes by. We have been really worried about his lack of cardio exercise, and are so thankful that Beth has taken on the challenge of addressing this issue.
A couple weeks ago I managed (once again!) to pull Steve's feeding tube out. The good news is that it was replaced with a different kind, which is smaller and less annoying. It also makes it possible to swim, so I guess was a good thing in the long run! We really hope to have it out before too many more months go by. His eating/drinking are getting better all the time.
We appealed to Blue Cross to increase the number of therapy days they'll pay for each year, and were turned down (despite letters from his PM&R doctor and neurologist). We're going to pursue this further, and are wondering if any of you have ideas or experience in doing this. If you do, you can communicate with us in this blog, or you can email me at lindapercha@gmail.com. We would really appreciate any thoughts or advice you might have! It's amazing to us that they'll pay for unlimited days in the hospital, but very few outpatient therapy days, despite the cost difference between the two. The other "interesting" thing we've learned is that people injured in auto accidents have opportunities for much, much more therapy than people injured in other ways. Just doesn't seem right, but that's the way it is.
Steve's friend Jamie is an OT student at Wayne State, and she just spent a couple hours here talking with and evaluating Steve. She and a group of fellow students are exploring the possibility of working with Steve, and also had a fundraiser for him. We are so excited to see what sort of plans they come up with!
We've often spoken of Steve's friends, and how amazed we are by the support they show him even as time goes by and their lives change. They visit, email, and text! No matter how they stay in touch, their presence is so important to his recovery.
We know of some people who would like to have contact with him, but maybe feel too much time has passed or feel that if they haven't been in touch before, it's not appropriate now. Please don't let that stop you. He would love to hear from you. His phone number for texting (which is a great way to communicate with him) is 248-770-6092. Thanks.
We also want to say thanks to the people who send a random note or email, or comment in this blog, just to let us know they haven't forgotten about Steve. It means so much.
We hope life is good for you. As Thanksgiving approaches, please know that we have all of you on our list of what we're thankful for.
Love,
Linda & Rob
Friday, September 18, 2009
Update #112 from Linda
Hi! I hope life is good for all of you.
I wanted to share some of the things that are happening...
Steve has now had three riding lessons (#4 is tomorrow). Last time he was noticeably better able to stay centered on Malabar (the horse he rides), maintain his posture, and ride for a longer time before getting tired out. We'll try to get a video tomorrow to share with you. We were shocked at the improvements we saw (as was his instructor) after only three lessons.
When Steve was in the hospital he had a couple massages, and we have been trying to get that into our routine for quite some time. It feels good to him, and well as helping with stretching (something we do daily). We have found a massage therapist who is now coming to our house weekly, along with his fiancee. I can't tell you what a blessing they are. They believe that they can help improve Steve's life, and are thankful for that opportunity. He is very comfortable with them and does a lot of talking when they're around. A wonderful relationship for many reasons!
The goofed-up botox treatment that was done to Steve's left leg a few months ago has suddenly corrected itself (worn off) and he can once again pivot, climb stairs, and put weight on his leg more easily. Walking, of course, is also improved because of this. Still a long way to go, but better than it was even a week ago.
All of a sudden Steve is able to handle thin liquids more easily. For example, tonight he and Rob stopped at Starbucks and he got a large iced drink. In the past, we would put it in a thermos cup and he would sip it for hours. Tonight it stayed in the original cup and he drank it in about 45 minutes with no problem. He is also eating more efficiently and with little TMJ trouble. Good things. Great things!
Speech is interesting. His voice sounds sort of like the voice of someone who is deaf, and is very weak and soft. But during the past week or so we are at times hearing a louder and slightly more powerful voice. He is more determined to speak to us, and only uses other communication methods as a last resort. We're hopeful that this is a sign of good things to come!
We have been going to the gym for many months now. Each time we go Steve works out on about five machines. In the past this could easily take 2 1/2 hours or more. Sometimes he would sit on a machine for 30-45 minutes, unable to get it going. He knew what to do, but just couldn't quickly command his body to do what it needed to do. The last three times we've gone, Steve was able to complete his workout in 1 - 1 1/2 hours. Plus he has added weight to all the machines, and has started working on some new muscles. He remembers the things he used to do, and looks around for appropriate machines. It's so good to have him actively involved in this part of his recovery!
We continue to decrease Steve's meds. He's down to a very small amount of one stimulant, a very small amount of an anti-seizure drug, and something for his stomach. We have been going through hospital records at the request of a new therapy facility and have been reminded of the huge numbers of meds he's been on in the past...we're so glad those days are just a memory!
We are still working on getting some traditional and non-traditional therapy in place for him and getting some things ironed out with insurance. Also are working on an idea with a phone that has a speech feature. Hope to report good news in both of these areas soon!
We are, as always, thankful to all of you for the support you provide in so many ways. The emotional support helps us stay focused and thinking positively. The financial support helps with things like horseback riding and massage, which help Steve so much. Thanks so much for your friendship, and for continuing to read this blog.
Take care.
Love,
Linda
I wanted to share some of the things that are happening...
Steve has now had three riding lessons (#4 is tomorrow). Last time he was noticeably better able to stay centered on Malabar (the horse he rides), maintain his posture, and ride for a longer time before getting tired out. We'll try to get a video tomorrow to share with you. We were shocked at the improvements we saw (as was his instructor) after only three lessons.
When Steve was in the hospital he had a couple massages, and we have been trying to get that into our routine for quite some time. It feels good to him, and well as helping with stretching (something we do daily). We have found a massage therapist who is now coming to our house weekly, along with his fiancee. I can't tell you what a blessing they are. They believe that they can help improve Steve's life, and are thankful for that opportunity. He is very comfortable with them and does a lot of talking when they're around. A wonderful relationship for many reasons!
The goofed-up botox treatment that was done to Steve's left leg a few months ago has suddenly corrected itself (worn off) and he can once again pivot, climb stairs, and put weight on his leg more easily. Walking, of course, is also improved because of this. Still a long way to go, but better than it was even a week ago.
All of a sudden Steve is able to handle thin liquids more easily. For example, tonight he and Rob stopped at Starbucks and he got a large iced drink. In the past, we would put it in a thermos cup and he would sip it for hours. Tonight it stayed in the original cup and he drank it in about 45 minutes with no problem. He is also eating more efficiently and with little TMJ trouble. Good things. Great things!
Speech is interesting. His voice sounds sort of like the voice of someone who is deaf, and is very weak and soft. But during the past week or so we are at times hearing a louder and slightly more powerful voice. He is more determined to speak to us, and only uses other communication methods as a last resort. We're hopeful that this is a sign of good things to come!
We have been going to the gym for many months now. Each time we go Steve works out on about five machines. In the past this could easily take 2 1/2 hours or more. Sometimes he would sit on a machine for 30-45 minutes, unable to get it going. He knew what to do, but just couldn't quickly command his body to do what it needed to do. The last three times we've gone, Steve was able to complete his workout in 1 - 1 1/2 hours. Plus he has added weight to all the machines, and has started working on some new muscles. He remembers the things he used to do, and looks around for appropriate machines. It's so good to have him actively involved in this part of his recovery!
We continue to decrease Steve's meds. He's down to a very small amount of one stimulant, a very small amount of an anti-seizure drug, and something for his stomach. We have been going through hospital records at the request of a new therapy facility and have been reminded of the huge numbers of meds he's been on in the past...we're so glad those days are just a memory!
We are still working on getting some traditional and non-traditional therapy in place for him and getting some things ironed out with insurance. Also are working on an idea with a phone that has a speech feature. Hope to report good news in both of these areas soon!
We are, as always, thankful to all of you for the support you provide in so many ways. The emotional support helps us stay focused and thinking positively. The financial support helps with things like horseback riding and massage, which help Steve so much. Thanks so much for your friendship, and for continuing to read this blog.
Take care.
Love,
Linda
Thursday, August 27, 2009
Update #111 from Linda
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
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
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"
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
Wednesday, January 14, 2009
update #103 from Linda and Rob
Hello! I hope life is good for all of you. Things are rolling along here...
We have reduced Steve's therapy from four to three days per week, and have started taking him to a club to work out twice each week. This was originally due to insurance issues, but we have become excited about it and it appears to be a blessing in disguise. This is a very well equipped gym and they have machines that can target Steve's weak muscles only. This is good because you want to get the weaker muscles to catch-up so to speak. Up until now, this was done at rehab by manually stretching and exercising Steve and took time away from walking. Our plan is to consult with Steve's therapists and formulate an action plan each week. Our good friend Jennie is a director there and has lots of ideas, as do a number of other people she knows. We met them all and they all want to help........just amazing!!! Steve has gone twice so far, and says he likes going. We are sure the atmosphere of the club will be good mentally for Steve, as well as the physical part of things. Before he was injured he worked out just about every day. THANKS, Jennie!
We're trying to give Steve more ownership of his therapy. For example, there are oral motor exercises that he should do several times each day, and we try to make him responsible for them rather than always telling him what to do. The same will hold true for his sessions at the gym...we'll have him keep track of things, tell us what he needs/wants to do there, etc.
We discovered that his recliner has an issue - leans to the right. We have spent weeks propping him up in that chair because he has balance issues, but it turns out this is partly because of a defective chair! Poor Steve. He was the only one who sat in it, so we never knew!
Steve and I play Rummikub almost every night, and I can't tell you how good that game has been for him...mental strategy, physically moving game pieces around, scanning the tray that holds your game pieces (good for his left side neglect issue), etc. Early on it would take a couple hours to play and numerous errors would be made. These days, no kidding, I am lucky to ever win!
We have baked cookies together a few times. His left arm isn't ready for such an activity yet, but he can do plenty of measuring, mixing, and scooping with his right. Last night he commented that he's not much help with things like that (not feeling sorry for himself, just stating reality as he saw it)...I made sure he understood that the fact that he's home, sitting at the kitchen table, and helping at all is beyond a miracle.
His strength and ability to eat are improving all the time. His speech is slower, but he communicates just fine by writing. When at all possible I give him the time to actually say things. He tries hard to talk and I'm so glad to see that he's not giving up on this issue.
About two weeks ago Steve had what I felt was a "good" day, and the next day was also good. Nothing you can really put your finger on, just a lot of little things in regards to his abilities, efforts, and attitude. A couple of days later Rob commented that he'd been noticing improvements, and so have his therapists. Rob and I have a "gut" feeling that a corner has been turned in his recovery. I'm not exactly sure what that means, but good things are happening! Please keep that energy and those prayers coming. They mean the world to all of us. Take care of yourselves.
Love,
Linda and Rob
We have reduced Steve's therapy from four to three days per week, and have started taking him to a club to work out twice each week. This was originally due to insurance issues, but we have become excited about it and it appears to be a blessing in disguise. This is a very well equipped gym and they have machines that can target Steve's weak muscles only. This is good because you want to get the weaker muscles to catch-up so to speak. Up until now, this was done at rehab by manually stretching and exercising Steve and took time away from walking. Our plan is to consult with Steve's therapists and formulate an action plan each week. Our good friend Jennie is a director there and has lots of ideas, as do a number of other people she knows. We met them all and they all want to help........just amazing!!! Steve has gone twice so far, and says he likes going. We are sure the atmosphere of the club will be good mentally for Steve, as well as the physical part of things. Before he was injured he worked out just about every day. THANKS, Jennie!
We're trying to give Steve more ownership of his therapy. For example, there are oral motor exercises that he should do several times each day, and we try to make him responsible for them rather than always telling him what to do. The same will hold true for his sessions at the gym...we'll have him keep track of things, tell us what he needs/wants to do there, etc.
We discovered that his recliner has an issue - leans to the right. We have spent weeks propping him up in that chair because he has balance issues, but it turns out this is partly because of a defective chair! Poor Steve. He was the only one who sat in it, so we never knew!
Steve and I play Rummikub almost every night, and I can't tell you how good that game has been for him...mental strategy, physically moving game pieces around, scanning the tray that holds your game pieces (good for his left side neglect issue), etc. Early on it would take a couple hours to play and numerous errors would be made. These days, no kidding, I am lucky to ever win!
We have baked cookies together a few times. His left arm isn't ready for such an activity yet, but he can do plenty of measuring, mixing, and scooping with his right. Last night he commented that he's not much help with things like that (not feeling sorry for himself, just stating reality as he saw it)...I made sure he understood that the fact that he's home, sitting at the kitchen table, and helping at all is beyond a miracle.
His strength and ability to eat are improving all the time. His speech is slower, but he communicates just fine by writing. When at all possible I give him the time to actually say things. He tries hard to talk and I'm so glad to see that he's not giving up on this issue.
About two weeks ago Steve had what I felt was a "good" day, and the next day was also good. Nothing you can really put your finger on, just a lot of little things in regards to his abilities, efforts, and attitude. A couple of days later Rob commented that he'd been noticing improvements, and so have his therapists. Rob and I have a "gut" feeling that a corner has been turned in his recovery. I'm not exactly sure what that means, but good things are happening! Please keep that energy and those prayers coming. They mean the world to all of us. Take care of yourselves.
Love,
Linda and Rob
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