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
Wednesday, February 25, 2009
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
Friday, December 26, 2008
Update #102
Hello and Merry Christmas!
Remember on my last post I said something about this being a very different Christmas for us...
On Christmas Eve near midnight, while helping Steve stand up, I managed to pull his feeding tube OUT. He said something like, "Ow, that hurt a little" and I said something like, "Gosh, what did I do?" :)
We got on the phone hoping to find someplace close that could put a new one in, but only UofM used that type of tube, so off to the emergency room we went. Spent the night there while they tried to convince someone from radiology to do the procedure, but no luck. Rob and Beth headed for home early Christmas morning and Steve and I stayed while they tried to talk the morning crew into it, but weren't able to make it happen. So they admitted him, and we spent Christmas at UofM. That was the bad news. The good news was that the four of us were together, the procedure went without incident, Steve has another chapter for his book, and we met some outstanding medical people who tried everything to make things happen faster for us and gave us excellent care. We even ran into Laura, who was Steve's speech therapist (her husband was also having a procedure in radiology) so we got to visit with her. In any case, we're home now and all is well!
We hope all of you had a wonderful and peaceful Christmas! Take care of yourselves and each other.
Love,
Linda
Remember on my last post I said something about this being a very different Christmas for us...
On Christmas Eve near midnight, while helping Steve stand up, I managed to pull his feeding tube OUT. He said something like, "Ow, that hurt a little" and I said something like, "Gosh, what did I do?" :)
We got on the phone hoping to find someplace close that could put a new one in, but only UofM used that type of tube, so off to the emergency room we went. Spent the night there while they tried to convince someone from radiology to do the procedure, but no luck. Rob and Beth headed for home early Christmas morning and Steve and I stayed while they tried to talk the morning crew into it, but weren't able to make it happen. So they admitted him, and we spent Christmas at UofM. That was the bad news. The good news was that the four of us were together, the procedure went without incident, Steve has another chapter for his book, and we met some outstanding medical people who tried everything to make things happen faster for us and gave us excellent care. We even ran into Laura, who was Steve's speech therapist (her husband was also having a procedure in radiology) so we got to visit with her. In any case, we're home now and all is well!
We hope all of you had a wonderful and peaceful Christmas! Take care of yourselves and each other.
Love,
Linda
Sunday, December 21, 2008
Update #101 from Linda
Hi! Hope all is well.
Rob is helping Steve get his day started, so I thought I'd write a little update.
Things are rolling along here. We have our Christmas tree up and our house is as decorated as it's going to get! Rob still thinks we'll get lights on our gigantic evergreen in the front yard, but it's just too cold out, never mind the fact that it takes hours to do it! We always cut a tree down, and Steve is famous for choosing one that won't fit in our house. :) This year we went to a place we've gone to before, but chose one they had already cut. He was fine with that, and we figured it was a nice solution. Beth was home yesterday and we decorated it. Beautiful.
Little things happen that remind us that progress is always being made. Yesterday Steve "scratched" some instant lottery tickets and removed all of the coating. In the past he'd make a few scratches and think it was done. I know that doesn't sound like much, but it's all good stuff. We also play Rummikub and Battleship often, and it's so obvious from playing them that his "left side neglect" issue is always improving. Every so often, Gail and Grams play Poker with Steve. He hasn't lost his touch for bluffing as they will attest!
I'm off work for two weeks now, and am so thankful to have this time at home, and the chance to go to therapy. On Monday Steve will see a different speech therapist and we're hoping for some good ideas from her. Prayers, please! During this time we're also hoping to take him to a gym (thanks, Jennie!) to try some of the equipment there. Rob has been talking to his PT about creating a table to have at home for stretching, so we're hoping to get started on that as well.
This will be a very different Christmas for us, but one that we are so thankful to be celebrating. As always we think of, and are so grateful for, all the people who have helped get Steve to this point. Blessings to all of you! Have a wonderful Christmas.
Love,
Linda
Rob is helping Steve get his day started, so I thought I'd write a little update.
Things are rolling along here. We have our Christmas tree up and our house is as decorated as it's going to get! Rob still thinks we'll get lights on our gigantic evergreen in the front yard, but it's just too cold out, never mind the fact that it takes hours to do it! We always cut a tree down, and Steve is famous for choosing one that won't fit in our house. :) This year we went to a place we've gone to before, but chose one they had already cut. He was fine with that, and we figured it was a nice solution. Beth was home yesterday and we decorated it. Beautiful.
Little things happen that remind us that progress is always being made. Yesterday Steve "scratched" some instant lottery tickets and removed all of the coating. In the past he'd make a few scratches and think it was done. I know that doesn't sound like much, but it's all good stuff. We also play Rummikub and Battleship often, and it's so obvious from playing them that his "left side neglect" issue is always improving. Every so often, Gail and Grams play Poker with Steve. He hasn't lost his touch for bluffing as they will attest!
I'm off work for two weeks now, and am so thankful to have this time at home, and the chance to go to therapy. On Monday Steve will see a different speech therapist and we're hoping for some good ideas from her. Prayers, please! During this time we're also hoping to take him to a gym (thanks, Jennie!) to try some of the equipment there. Rob has been talking to his PT about creating a table to have at home for stretching, so we're hoping to get started on that as well.
This will be a very different Christmas for us, but one that we are so thankful to be celebrating. As always we think of, and are so grateful for, all the people who have helped get Steve to this point. Blessings to all of you! Have a wonderful Christmas.
Love,
Linda
Saturday, December 6, 2008
Update #100 from Linda
Hello! I hope life is good for all of you, and that you all had a nice Thanksgiving.
We took Steve to Muskegon after having a great dinner on Thanksgiving, stayed in a hotel, and spent the next afternoon at Aunt Jean's house visiting with lots of aunts, uncles, and cousins. Steve has such a connection to those people and that part of the state...it was wonderful therapy for him (and us!). We did a little driving around to see some familiar places, scooped up a bag of beach sand, spent the night at the hotel, and drove home Saturday. Such a nice time.
We are so often reminded that Steve has wonderful friends. People that stay in touch, include him in things, and take time out of busy schedules for him. You know who you are, and we thank you for that. So does Steve.
We're often asked about communicating with Steve. Please know that he reads all of your text messages, but doesn't always respond. He keeps his phone handy and checks it often, so please keep those messages coming! He truly looks forward to them. As far as email goes, he gets on his computer every few days, but usually needs help reading those notes. It might be a vision issue...not sure. You might want to keep them short and know that he loves to get them, but probably won't respond. I realize this makes things a little one-sided, but thanks for your understanding. You just can't IMAGINE how important contact with his friends is to him.
We are in the process of ordering a portable communication device for him to try. It's something that allows him to type messages using an on-screen keyboard, push a button, and the message is read out loud (by a voice named "Mike"!). This will give him the chance to hear his words said out loud, and he seems to like that. It will also give him the chance to "talk" on the phone, although the process is very slow. The other thing they think it will do is allow him to repeat these messages himself, which will hopefully help with his speaking. We're hoping to have this in a few weeks.
Last night Rob brought us a drink from Starbucks...Steve had his favorite white chocolate mocha with skim milk :) and drank the entire thing. We were remembering the first time he had one during the summer and managed about a teaspoon or two of it. This time he took the top off the cup and slurped every drop with a straw! Sometimes it's easy to lose sight of the progress he's making, and then a little thing like that happens to remind us.
We're asking for prayers for "Matt" who is a good friend of one of Steve's very good friends. He visited Steve in the hospital and compared scars and stories with him. He's facing very serious new health challenges now...please send energy and prayers to him. Thanks.
As always, thanks for EVERYTHING. Stay warm and take care of yourselves and each other!
Love,
Linda
We took Steve to Muskegon after having a great dinner on Thanksgiving, stayed in a hotel, and spent the next afternoon at Aunt Jean's house visiting with lots of aunts, uncles, and cousins. Steve has such a connection to those people and that part of the state...it was wonderful therapy for him (and us!). We did a little driving around to see some familiar places, scooped up a bag of beach sand, spent the night at the hotel, and drove home Saturday. Such a nice time.
We are so often reminded that Steve has wonderful friends. People that stay in touch, include him in things, and take time out of busy schedules for him. You know who you are, and we thank you for that. So does Steve.
We're often asked about communicating with Steve. Please know that he reads all of your text messages, but doesn't always respond. He keeps his phone handy and checks it often, so please keep those messages coming! He truly looks forward to them. As far as email goes, he gets on his computer every few days, but usually needs help reading those notes. It might be a vision issue...not sure. You might want to keep them short and know that he loves to get them, but probably won't respond. I realize this makes things a little one-sided, but thanks for your understanding. You just can't IMAGINE how important contact with his friends is to him.
We are in the process of ordering a portable communication device for him to try. It's something that allows him to type messages using an on-screen keyboard, push a button, and the message is read out loud (by a voice named "Mike"!). This will give him the chance to hear his words said out loud, and he seems to like that. It will also give him the chance to "talk" on the phone, although the process is very slow. The other thing they think it will do is allow him to repeat these messages himself, which will hopefully help with his speaking. We're hoping to have this in a few weeks.
Last night Rob brought us a drink from Starbucks...Steve had his favorite white chocolate mocha with skim milk :) and drank the entire thing. We were remembering the first time he had one during the summer and managed about a teaspoon or two of it. This time he took the top off the cup and slurped every drop with a straw! Sometimes it's easy to lose sight of the progress he's making, and then a little thing like that happens to remind us.
We're asking for prayers for "Matt" who is a good friend of one of Steve's very good friends. He visited Steve in the hospital and compared scars and stories with him. He's facing very serious new health challenges now...please send energy and prayers to him. Thanks.
As always, thanks for EVERYTHING. Stay warm and take care of yourselves and each other!
Love,
Linda
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