Hey everybody---
Just thought I'd write a quick little (yeah right) progress note. Steve's been doing great!
I arrived Sunday evening and told Steve I had printed off his facebook page (a social networking website that you can create your own profile). He seemed eager for me to read off all of the nice messages his friends had written. There were so many, that I paused twice to make sure that he wanted me to continue. He did and he definitely cracked up a couple of times when I read off his own funny quotes in that section. =)
He had a fantastic day in physical therapy on yesterday. He continues to lift his head up on his own and is now getting more and more leg strength. They had him lay down on his back and had him bend both knees separately. He did this on again, off again multiple times. The physical therapist looked pleasantly surprised...(and it's hard to impress that guy!)
Rob reported that Speech yesterday was just has impressive. They had him counting out loud. He said that not only was there was no doubt that he made a voice that resembled the number, he was also attempting to move his tongue to make the appropriate sound. Rob also reported that while he was telling Steve that he understands it's hard to relax his left arm and that it's tough, Steve said a very obvious "I know."
In Occupational Therapy they're starting to assess his swallowing functions as well. Hopefully, Steve continues to work at this so that he can soon take liquids from a straw. I bet he can't wait for that day to come. They're also bringing in a Neuro-optomologist to test his eyesight. Although he tells us that he doesn't have trouble seeing the tv and such, he expresses to us that he has trouble seeing the computer screen when close.
Something that cracked me up yesterday was when I was trying to 'entertain' him while the nurse was giving him his meds. I kissed his hand a couple of times and put my nose in-between both of his fingers. I said, "You got my nose!" smiled and winked at him. He then put his thumb in-between his fingers as to indicate that he got it. We both cracked up. =)
Also, Linda just informed me that Steve's new discharge date has been changed to May 28th!!! This is great news!!! Before his tentative discharge was May 5th. We were told that the only way this could be extended is if he were to show noticeable improvement. Boy, did he show them!! Go Steve!!
That's all for now....talk to you soon!
Danielle
Tuesday, April 29, 2008
Monday, April 28, 2008
update #57 from Linda
Hello, everyone. Just a quick post to let you know that Steve had a wonderful, relaxing weekend. There was a time when I thought we should use his weekends to practice the things he learns in therapy during the week, but have realized he really needs a couple of days to rest...he works so hard Monday through Friday!
On Saturday Beth cut his hair, which was a little tricky, but he feels so much better! We always do things for him like wash his hair and "lotion" his hands and feet...you can tell by the look on his face that these things feel so good. It's also nice to have a quieter room, now that all the air moisturizing equipment is gone. He also LOVES that his trach is gone. The blood pressure meds are gone, and the anti-seizure meds have been (and will continue to be) reduced. Things are good!
The one event that made me laugh was when he was trying to communicate to me that he wanted the remote. I thought he had an itch, and pretty much fixated on that thought. He was writing "r" for remote, and I was sure he was writing "r" for right, so thought he had an itchy right eye, ear, etc. Finally he looked at me in amusement and quickly wrote "cheek" and I thought the problem was solved. But that was just to get me to stop obsessing about the itch thing! He kept gesturing that he wanted to write something else, looked me right in the eyes, and in very large letters wrote "TV". That's when I realized what he wanted, and the look he gave me was pretty funny - like he has no problem communicating, so what was my problem?! We have noticed that he doesn't get nearly as frustrated with his writing as he used to...seems to have figured out that we'll understand eventually, just may take us some time.
I hope everyone is having a nice day. Take care of yourselves!
Linda
On Saturday Beth cut his hair, which was a little tricky, but he feels so much better! We always do things for him like wash his hair and "lotion" his hands and feet...you can tell by the look on his face that these things feel so good. It's also nice to have a quieter room, now that all the air moisturizing equipment is gone. He also LOVES that his trach is gone. The blood pressure meds are gone, and the anti-seizure meds have been (and will continue to be) reduced. Things are good!
The one event that made me laugh was when he was trying to communicate to me that he wanted the remote. I thought he had an itch, and pretty much fixated on that thought. He was writing "r" for remote, and I was sure he was writing "r" for right, so thought he had an itchy right eye, ear, etc. Finally he looked at me in amusement and quickly wrote "cheek" and I thought the problem was solved. But that was just to get me to stop obsessing about the itch thing! He kept gesturing that he wanted to write something else, looked me right in the eyes, and in very large letters wrote "TV". That's when I realized what he wanted, and the look he gave me was pretty funny - like he has no problem communicating, so what was my problem?! We have noticed that he doesn't get nearly as frustrated with his writing as he used to...seems to have figured out that we'll understand eventually, just may take us some time.
I hope everyone is having a nice day. Take care of yourselves!
Linda
Friday, April 25, 2008
Update #56 from Rob
Hello everyone,
Steve had a good day today. It started with PT where they put him on his belly. It would have been OK but they forgot he still has the feeding tube and laying on it did not make Steve happy. Once settled, however, he was able to bend both legs at the knees and bring the shin upwards. His leg strength is gradually improving.
Next was Speech where we found that Steve's' therapist actually contacted Dr. Armonda when she went to DC this week. She somehow met up with him and had him sign Steve's copy of the book "In an Instant". What is interesting is that Steve seems to know who Dr. Armonda is! He also seems to know about the book. I know we talked amongst ourselves while in ICU, about the book and the fact that Steve has the same surgeon as Bob Woodruff, but I do not remember if we ever told him the actual name. Steve must have heard all that was said when we were in his room.
Bob Woodruff is the keynote speaker at U of M's graduation ceremony next week and hopefully will also sign Steve's' book.
She also asked Steve if he could recommend a good vacation spot and he wrote North Muskegon. Using this approach of talking to Steve about subjects he is familiar with really seems to keep him "awake" during the session and is producing better results.
We next went to OT where they worked in conjunction with Rehab Engineering on a computer program that Steve can use to communicate. They let Steve try it out and he was able to spell out his name once he got the hang of it. It is here that we found out that although Steve can see with both eyes, he may not be able to focus on items that are to his left of center. The computer display was altered so that all of the letters appear on his right. Steve has also told me he does not need his glasses to watch the TV which would actually be an improvement in his vision.
Neuro-ophthalmologists are scheduled to examine Steve next week to get a better handle on his vision.
Another thing noticed by Steve's' OT therapist is that he has much better head control without his helmet. She was so surprised that she is planning to do the swallow test earlier than anticipated. This is good news because it would get Steve on the way to removal of the feeding tube and eventually on to normal food.
The last session was PT again and Steve was actually able to do bicep curls with a weight on his right hand.
We also plan to take Nyah, our dog, in to see Steve in the near future. That will be interesting!
Take Care.
Rob
Steve had a good day today. It started with PT where they put him on his belly. It would have been OK but they forgot he still has the feeding tube and laying on it did not make Steve happy. Once settled, however, he was able to bend both legs at the knees and bring the shin upwards. His leg strength is gradually improving.
Next was Speech where we found that Steve's' therapist actually contacted Dr. Armonda when she went to DC this week. She somehow met up with him and had him sign Steve's copy of the book "In an Instant". What is interesting is that Steve seems to know who Dr. Armonda is! He also seems to know about the book. I know we talked amongst ourselves while in ICU, about the book and the fact that Steve has the same surgeon as Bob Woodruff, but I do not remember if we ever told him the actual name. Steve must have heard all that was said when we were in his room.
Bob Woodruff is the keynote speaker at U of M's graduation ceremony next week and hopefully will also sign Steve's' book.
She also asked Steve if he could recommend a good vacation spot and he wrote North Muskegon. Using this approach of talking to Steve about subjects he is familiar with really seems to keep him "awake" during the session and is producing better results.
We next went to OT where they worked in conjunction with Rehab Engineering on a computer program that Steve can use to communicate. They let Steve try it out and he was able to spell out his name once he got the hang of it. It is here that we found out that although Steve can see with both eyes, he may not be able to focus on items that are to his left of center. The computer display was altered so that all of the letters appear on his right. Steve has also told me he does not need his glasses to watch the TV which would actually be an improvement in his vision.
Neuro-ophthalmologists are scheduled to examine Steve next week to get a better handle on his vision.
Another thing noticed by Steve's' OT therapist is that he has much better head control without his helmet. She was so surprised that she is planning to do the swallow test earlier than anticipated. This is good news because it would get Steve on the way to removal of the feeding tube and eventually on to normal food.
The last session was PT again and Steve was actually able to do bicep curls with a weight on his right hand.
We also plan to take Nyah, our dog, in to see Steve in the near future. That will be interesting!
Take Care.
Rob
Thursday, April 24, 2008
Update #55 from Linda
Hello, everyone!
At long last, Steve had his trach removed this morning! Rob said he coughed much less than usual during the day, and tonight he seemed to be experimenting with his voice more than ever...said "Beth" for the first time. :) As any man who walks into his room knows, I'm always trying to talk someone into shaving Steve, as it's so traumatic for me (and for him). Tonight he didn't mind at all, so I'm thinking that having the trach out changed some weird sensation he must have been having in his neck. A little thing, but a huge relief!
Tonight I was telling his nurse that (a couple days ago) some doctors were commenting that it was too bad that he couldn't move his legs very well yet, and he promptly raised them up. She said that he must have been thinking "This will shut them up!" and I said that, with his personality, I'm sure that was just what was on his mind. Steve's face immediately lit up with a huge grin...hilarious!
"Doctor Rob" came up with a couple good questions regarding some meds that Steve is on and asked his rehab doctors if he could be taken off them. They spoke with the neuro doctors and it was decided that he'd be weaned off them...they have already started with one. The hope is that he'll have more energy once they're gone. Yeah, Rob!
Another thing that I find interesting is that, no matter how much they put him through and no matter how much it seems to hurt, he will never take pain meds. They offer him tylenol several times each day and he always answers "no". By the next day he seems to have worked through whatever was causing him pain and is ready to move along. Such strength.
All is all, a good day!
Take care!
Linda
At long last, Steve had his trach removed this morning! Rob said he coughed much less than usual during the day, and tonight he seemed to be experimenting with his voice more than ever...said "Beth" for the first time. :) As any man who walks into his room knows, I'm always trying to talk someone into shaving Steve, as it's so traumatic for me (and for him). Tonight he didn't mind at all, so I'm thinking that having the trach out changed some weird sensation he must have been having in his neck. A little thing, but a huge relief!
Tonight I was telling his nurse that (a couple days ago) some doctors were commenting that it was too bad that he couldn't move his legs very well yet, and he promptly raised them up. She said that he must have been thinking "This will shut them up!" and I said that, with his personality, I'm sure that was just what was on his mind. Steve's face immediately lit up with a huge grin...hilarious!
"Doctor Rob" came up with a couple good questions regarding some meds that Steve is on and asked his rehab doctors if he could be taken off them. They spoke with the neuro doctors and it was decided that he'd be weaned off them...they have already started with one. The hope is that he'll have more energy once they're gone. Yeah, Rob!
Another thing that I find interesting is that, no matter how much they put him through and no matter how much it seems to hurt, he will never take pain meds. They offer him tylenol several times each day and he always answers "no". By the next day he seems to have worked through whatever was causing him pain and is ready to move along. Such strength.
All is all, a good day!
Take care!
Linda
Update #55 from Danielle
Hey guys---
Without a doubt, the most exciting thing that happened today was Steve getting his trach out! I was shocked at how simple and easy of a process it was. One of the docs came in around 830 this morning and told Steve to exhale, pulled it out, and covered it with gauze and tape. Vuwalla!! Good as new. ;) It must have felt funny to him at first because he coughed quite a bit, but then by the time rehab started he had hardly coughed at all. The docs mentioned that they'll keep an eye on it everyday and it should heal up on it's own in about 2wks.
Steve is also getting weaned off a couple of his medications. He has his daily meds every morning and night, which all consist of blood pressure medication, blood thinners, heartrate meds, anti-seizure meds, etc., etc....we're starting to wonder because he's doing so much better lately, if these medications are all really necessary. Rob thought they all may contribute to a 'cloudy mind' from time to time and brought this to the attention of a couple doctors. They agreed that they could start weaning him off a couple.
He did a couple things last night and this morning that I hadn't seen him do before. At night he's definitely moving his legs a lot more. It looked as though he were having a lot of 'active' dreams. (He must have been playing soccer last night!) Before, the physical therapists commented that they were only seeing distal movement in Steve, (feet, toes, hands, etc.), but now they are noticing more movement in both legs and shoulders. He was facinated with touching his face earlier this morning too. He'd either point to his mouth, (indicating more water) or would scratch his own neck and ears, (with a little lifting help). He seemed to be feeling around and making new connections. He also wrote the word 'Therapy' this morning. He just was interested to know the schedule for the day. All very cool!
Today in physical rehab they worked a lot with his legs on a sliding board. They had him lay down on his back and slide his legs back and forth....abducting and adducting. He did a great job at this and the physical therapist seemed pleased. They also sat him up in the sitting position with someone supporting his back and placed a mirror in front of him. This was so he could practice with head/neck strength on his own. He still does a great job at turning his head back and forth but before when his head fell forward, someone would always have to push it back for him. Today, his head fell forward but he lifted it all the way up again all by himself! It definitely takes a lot of strength for him to do this...keep in mind he also wears a pretty heavy helmet when he's doing these exercises!
There was a moment this morning, however, that just about broke my heart. A woman came in with a little tiny envelope addressed to Steve, so I decided to open it and read it to him. I looked to see who it was from and told Steve it was from Natalie Clark....both of his eyebrows went up. The letter went on to say how much she was thinking about him and how she was reminded of a little story about him the other day. She said she was walking downtown Ann Arbor one day when she saw Steve sitting outside at Charlies (one of his favorite restaurants/bars) with another friend, Leigh. She stopped by to say hello to both of them. Steve was unaware that the two of them had actually good friends as well. The story went on to say that Steve had mentioned he found it facinating that all the good people he had met at college seemed to stick together and how fortunate he had felt. It wrapped up by reassuring Steve when things seem to get really hard and tough, to remember that all of those same 'good' people are rooting for him and love him very much. I got slightly teary eyed reading it when I looked at him over the card to find tears streaming down his face. He let out a couple loud 'noises' and it truly looked like he was just bawling. :*( I grabbed him, hugged him, and said, "Steve, you're going to get through this! See? So many people are behind you and are here supporting you...everything is going to be just fine!" He seemed to calm down, but goodness, we were both a wreck! It's the first time I've ever seen him react like that...maybe more of his emotions are coming back??
Alright, well that's it for now. Thanks again for all the great advice, thoughts and kind words!!
Steve says 'Hi'....
Danielle
Without a doubt, the most exciting thing that happened today was Steve getting his trach out! I was shocked at how simple and easy of a process it was. One of the docs came in around 830 this morning and told Steve to exhale, pulled it out, and covered it with gauze and tape. Vuwalla!! Good as new. ;) It must have felt funny to him at first because he coughed quite a bit, but then by the time rehab started he had hardly coughed at all. The docs mentioned that they'll keep an eye on it everyday and it should heal up on it's own in about 2wks.
Steve is also getting weaned off a couple of his medications. He has his daily meds every morning and night, which all consist of blood pressure medication, blood thinners, heartrate meds, anti-seizure meds, etc., etc....we're starting to wonder because he's doing so much better lately, if these medications are all really necessary. Rob thought they all may contribute to a 'cloudy mind' from time to time and brought this to the attention of a couple doctors. They agreed that they could start weaning him off a couple.
He did a couple things last night and this morning that I hadn't seen him do before. At night he's definitely moving his legs a lot more. It looked as though he were having a lot of 'active' dreams. (He must have been playing soccer last night!) Before, the physical therapists commented that they were only seeing distal movement in Steve, (feet, toes, hands, etc.), but now they are noticing more movement in both legs and shoulders. He was facinated with touching his face earlier this morning too. He'd either point to his mouth, (indicating more water) or would scratch his own neck and ears, (with a little lifting help). He seemed to be feeling around and making new connections. He also wrote the word 'Therapy' this morning. He just was interested to know the schedule for the day. All very cool!
Today in physical rehab they worked a lot with his legs on a sliding board. They had him lay down on his back and slide his legs back and forth....abducting and adducting. He did a great job at this and the physical therapist seemed pleased. They also sat him up in the sitting position with someone supporting his back and placed a mirror in front of him. This was so he could practice with head/neck strength on his own. He still does a great job at turning his head back and forth but before when his head fell forward, someone would always have to push it back for him. Today, his head fell forward but he lifted it all the way up again all by himself! It definitely takes a lot of strength for him to do this...keep in mind he also wears a pretty heavy helmet when he's doing these exercises!
There was a moment this morning, however, that just about broke my heart. A woman came in with a little tiny envelope addressed to Steve, so I decided to open it and read it to him. I looked to see who it was from and told Steve it was from Natalie Clark....both of his eyebrows went up. The letter went on to say how much she was thinking about him and how she was reminded of a little story about him the other day. She said she was walking downtown Ann Arbor one day when she saw Steve sitting outside at Charlies (one of his favorite restaurants/bars) with another friend, Leigh. She stopped by to say hello to both of them. Steve was unaware that the two of them had actually good friends as well. The story went on to say that Steve had mentioned he found it facinating that all the good people he had met at college seemed to stick together and how fortunate he had felt. It wrapped up by reassuring Steve when things seem to get really hard and tough, to remember that all of those same 'good' people are rooting for him and love him very much. I got slightly teary eyed reading it when I looked at him over the card to find tears streaming down his face. He let out a couple loud 'noises' and it truly looked like he was just bawling. :*( I grabbed him, hugged him, and said, "Steve, you're going to get through this! See? So many people are behind you and are here supporting you...everything is going to be just fine!" He seemed to calm down, but goodness, we were both a wreck! It's the first time I've ever seen him react like that...maybe more of his emotions are coming back??
Alright, well that's it for now. Thanks again for all the great advice, thoughts and kind words!!
Steve says 'Hi'....
Danielle
Tuesday, April 22, 2008
Update #54 from Danielle
Hey everybody!
Steve had a long, but successful day in rehab today. When I showed up this afternoon he was just arriving to PT. They told him that they were going to have him stand up today, and both of his eyebrows went up. He seemed anxious to try. What they actually did was put him on a leaning table, strapped him in, and tilted the table forward. It was great to see him put some weight on his knees for the first time. He handled it wonderfully. =)
While he was tilted almost in a complete stand-up position, the physical therapist told him to lift up his right hand to his shoulder 10x. While he was doing this, the therapist got a little distracted talking to another. I was in the background watching and saw that he did 9 'pull ups'. The therapist turned to Steve and asked if he did 10. I wasn't sure if Steve was actually counting in his head, but then he game the thumbs down signal and did one more. It cracked me up. He's definitely not cutting any corners!!
He had an additional type of therapy today called Recreational Therapy. These people adapt to the patients' interests and use stimulants such as card games, board games, etc. Today the session consisted of just asking Steve what he liked to do to get a better idea on how to treat him. They had a whole long list of items and he answered all of them with his true personality in mind. He game a thumbs up to things like sports, music, movies, and gave a thumbs down to sewing, hunting, and gardening. We all know how true that is!
Tonight is the first night that he'll have his trach plugged throughout the whole night. He's been having it plugged for days at a time now, but getting rest at night. We monitor his oxygen level from time to time and he consistently keeps it in adequate range. He has also been making more and more noises. He's definitely learning how to move his tongue around and to use his voice again. Rob mentioned that when Steve was in speech earlier, he clearly said 'Nyah' (his dog) when asked what his pet's name was.
We're figuring out more ways how to communicate with Steve, thanks to the ideas friends and family have shared! Aunt Gail drew him a large picture of man's head and called it the 'Itch Chart'. (I think that's what it's called, correct me if I'm wrong!) Anyways, it's another way that Steve can tell us where he may have an itch if he can't reach for himself. Today, he pointed to the picture and told us his head itches. Thanks Aunt Gail!! Beth has helped tremendously too. She set up a program on his computer with large letters and words at the bottom like, water, mom, dad, irritating, and so forth. He now has a laser mouse and was practicing moving it around to the letters today. Even though he's still getting the hang of it, he's great at clicking the mouse himself!
The thing that gave us all a good laugh today was something he did when Beth and Rob were getting ready to leave. They were saying their goodbyes when I asked if he could wave goodbye to them. He didn't do it at first so Beth thought she'd try to make him smile. She held up the 'Vulcan' signal and waved to him. To those who don't know what this is, it's when you put your index and middle finger together and then your ring and pinkie finger together separately. Right after she did it, he quickly lifted up his forearm and did it back to her. It was hilarious. =)
Alright, that's it for now. Thank you all again for your continuing prayers and positive thoughts!! Steve continues to amaze us everyday! I also want to thank Jen, Uncle Don, and the others who have shared their personal stories and experiences with Steve in the comments. Please feel free to do so and continue to share! We'd all love to hear what you've witnessed Steve do for yourselves.
Hope all is well!!
-Danielle
Steve had a long, but successful day in rehab today. When I showed up this afternoon he was just arriving to PT. They told him that they were going to have him stand up today, and both of his eyebrows went up. He seemed anxious to try. What they actually did was put him on a leaning table, strapped him in, and tilted the table forward. It was great to see him put some weight on his knees for the first time. He handled it wonderfully. =)
While he was tilted almost in a complete stand-up position, the physical therapist told him to lift up his right hand to his shoulder 10x. While he was doing this, the therapist got a little distracted talking to another. I was in the background watching and saw that he did 9 'pull ups'. The therapist turned to Steve and asked if he did 10. I wasn't sure if Steve was actually counting in his head, but then he game the thumbs down signal and did one more. It cracked me up. He's definitely not cutting any corners!!
He had an additional type of therapy today called Recreational Therapy. These people adapt to the patients' interests and use stimulants such as card games, board games, etc. Today the session consisted of just asking Steve what he liked to do to get a better idea on how to treat him. They had a whole long list of items and he answered all of them with his true personality in mind. He game a thumbs up to things like sports, music, movies, and gave a thumbs down to sewing, hunting, and gardening. We all know how true that is!
Tonight is the first night that he'll have his trach plugged throughout the whole night. He's been having it plugged for days at a time now, but getting rest at night. We monitor his oxygen level from time to time and he consistently keeps it in adequate range. He has also been making more and more noises. He's definitely learning how to move his tongue around and to use his voice again. Rob mentioned that when Steve was in speech earlier, he clearly said 'Nyah' (his dog) when asked what his pet's name was.
We're figuring out more ways how to communicate with Steve, thanks to the ideas friends and family have shared! Aunt Gail drew him a large picture of man's head and called it the 'Itch Chart'. (I think that's what it's called, correct me if I'm wrong!) Anyways, it's another way that Steve can tell us where he may have an itch if he can't reach for himself. Today, he pointed to the picture and told us his head itches. Thanks Aunt Gail!! Beth has helped tremendously too. She set up a program on his computer with large letters and words at the bottom like, water, mom, dad, irritating, and so forth. He now has a laser mouse and was practicing moving it around to the letters today. Even though he's still getting the hang of it, he's great at clicking the mouse himself!
The thing that gave us all a good laugh today was something he did when Beth and Rob were getting ready to leave. They were saying their goodbyes when I asked if he could wave goodbye to them. He didn't do it at first so Beth thought she'd try to make him smile. She held up the 'Vulcan' signal and waved to him. To those who don't know what this is, it's when you put your index and middle finger together and then your ring and pinkie finger together separately. Right after she did it, he quickly lifted up his forearm and did it back to her. It was hilarious. =)
Alright, that's it for now. Thank you all again for your continuing prayers and positive thoughts!! Steve continues to amaze us everyday! I also want to thank Jen, Uncle Don, and the others who have shared their personal stories and experiences with Steve in the comments. Please feel free to do so and continue to share! We'd all love to hear what you've witnessed Steve do for yourselves.
Hope all is well!!
-Danielle
Saturday, April 19, 2008
update #53 from Grams and Linda
Hello! The most exciting thing that happened with Steve today was when he was visited by a speech therapist, Susan. She visits him on the weekends, but has never gotten much response from him. Today she was impressed! She had him write many things, including his first and last names, the year, the month, the type of building he was in, the name of this hospital, and the city this hospital is in. She also showed him pictures of a house, a comb, and a toothbrush and he wrote the names of those things. Then she asked a series of "yes" and "no" questions, and he responded with a thumbs up or down...and got them all right! They were things like is the door open, are the lights on, did you go to Michigan State, is your degree in biology, etc.
On Friday in speech he was given a written choice of three things that might have happened the previous day, and asked which had really happened - and answered correctly!
It's getting so much easier to understand his writing. You can hand him a pen and he's able to position it in his hand. His actual writing is much clearer, and his hand and arm seem stronger, so he's able to communicate more without tiring out.
Some friends and relatives stopped by today with funny stories to tell, and he laughed (silently) along with the rest of us! It was so nice to see his response.
Our current concern is his left arm, which is challenging for him to straighten out. We work on that often with massage and stretching. Any thoughts, ideas?
Hope you're enjoying the weekend!
Love, Grams (Mary) and Linda
On Friday in speech he was given a written choice of three things that might have happened the previous day, and asked which had really happened - and answered correctly!
It's getting so much easier to understand his writing. You can hand him a pen and he's able to position it in his hand. His actual writing is much clearer, and his hand and arm seem stronger, so he's able to communicate more without tiring out.
Some friends and relatives stopped by today with funny stories to tell, and he laughed (silently) along with the rest of us! It was so nice to see his response.
Our current concern is his left arm, which is challenging for him to straighten out. We work on that often with massage and stretching. Any thoughts, ideas?
Hope you're enjoying the weekend!
Love, Grams (Mary) and Linda
Thursday, April 17, 2008
Update #52 from---Rob
Just a quick note to keep all of you informed.
A couple of nice things happened today.
While in speech, his therapist Laura asked Steve to look at a picture, (a train on a track), and then to look at two sentences and determine which one described the picture. It took Steve some time to do this and we wondered why. It seemed Steve was having a tough time reading the sentences due to the fact that they were on a table and evidently too close to him. Once held at a farther distance he easily looked at the correct sentence. We will bring his glasses to speech from now on. We feel that Steve is really "all there" intellectually and we cannot wait to hear him talk, of which he is really close.
We also are seeing him open the right eye farther. Today we saw it about 1/2 way open. It seems to track similarly with the left, but has not gone past its' mid line----until today!
It has only been a week since we started holding it open in rehab and now we see this.
Just amazing!
With Thanks,
Rob
A couple of nice things happened today.
While in speech, his therapist Laura asked Steve to look at a picture, (a train on a track), and then to look at two sentences and determine which one described the picture. It took Steve some time to do this and we wondered why. It seemed Steve was having a tough time reading the sentences due to the fact that they were on a table and evidently too close to him. Once held at a farther distance he easily looked at the correct sentence. We will bring his glasses to speech from now on. We feel that Steve is really "all there" intellectually and we cannot wait to hear him talk, of which he is really close.
We also are seeing him open the right eye farther. Today we saw it about 1/2 way open. It seems to track similarly with the left, but has not gone past its' mid line----until today!
It has only been a week since we started holding it open in rehab and now we see this.
Just amazing!
With Thanks,
Rob
Wednesday, April 16, 2008
Update #51 from Danielle
Hey guys!
These past couple of days with Steve have definitely been exciting for all of us. I can't express enough how much he is improving each and every day. As each new day comes, he either "Wow's" us by writing a new note or makes us raise our own eyebrows when he does something new physically. It's so neat to compare where he was just a one week ago to what he can do today.
I almost feel as though there are too many new things he did to try to explain them in paragraph form....so I'll just list them off one after another: =)
-Last night he made the notion he wanted to write something, so we gave him a pad of paper and pen. He wrote "Do you..." Pointed at me, and then wrote "want to watch a movie?" That made me laugh. Do I want to watch a movie?! What about you?! He knew I was staying with him, so I think he was already 'preparing' on what to do for the next couple of hours.
-I set up the portable DVD player, (w/ Rob's help) on a table that could move over his bed. It was set up a little too high at first while I was still messing with the cords, when I noticed he lifted his torso and head off of the bed a little bit to see the screen. I assured him that I'd adjust the height of the table, and he leaned backwards again. This definitely shows he's getting more strength!
-Throughout the night he wrote short notes such as, 'More water', 'Socks off', 'Boot off'....but the one that was most impressive to me was after I noticed him rubbing his belly. He motioned that he wanted to write, and he wrote that he had a little stomach ache. When I clarified that this is what he meant, he lifted up his right hand close to his chin and put his thumb and index finger close together as to indicate 'Just a little bit'. So cute. =) The nurse gave a little medication and it seemed to do the trick.
-Linda and Beth reported that he wrote other notes too like 'My nose itches' and 'Can you get a Q-tip'...for his ears. It's SUCH a relief to all of us that he can communicate with us in this way. They also said at one point he accidentally held the pen upside down. When they told this to him, he quickly flipped the pen over on his own with his right hand only. Talk about good motor skills!
-Rob has definitely surpassed asking Steve simple addition problems, and is now asking him cube roots. The rest of us couldn't help but laugh a little at first when he first started asking Steve these problems, but he honestly seems to know the answers! He taught Steve how to answer by holding up the correct amount of fingers with his right hand. If the number was greater than 5, he was to hold up two numbers separately. So then Rob asked him what the cube root of 512 is. Steve held up 5 fingers first, paused, then held up 3. Amazing! Shoot-I didn't even know that the answer was 8! Rob says Steve knew cube roots at the drop of a hat before...it's incredible that he's showing us he still does!
-Something that made me laugh earlier this morning was when my sister Jessie called on my phone. I answered in front of him and said "Steve, Jessie's on the phone!" He then lifted up his hand and forearm and waved back and forth. I was so shocked and said, "Steve says HI!! Oh my gosh!!"
-They plugged his trach today for the first time today in therapy too. You could tell it was a whole new feeling for him to completely breath through his mouth and nose. He did great at keeping his O2 level up and concentrated hard on making noise. Even though he wasn't quite ready to make a clear voice today, he definitely whispered a heavy "Yeah" in OT for more water. The docs are going to have his trach plugged more and more throughout the week.
-The last thing I feel I should mention that was pretty impressive was when the speech therapist asked him how old he is. He lifted up 2, then 3 fingers up separately. What's crazy is that he was hardly responding, if at all, at the time of his birthday on March 3rd. He definitely seems somewhat aware of how much time has gone by.
Ok, I could go on and on...but this is starting to turn into a short novel. I hope that this caught everyone up enough and that I can post soon with more great news!!
Xoxo's
Danielle
These past couple of days with Steve have definitely been exciting for all of us. I can't express enough how much he is improving each and every day. As each new day comes, he either "Wow's" us by writing a new note or makes us raise our own eyebrows when he does something new physically. It's so neat to compare where he was just a one week ago to what he can do today.
I almost feel as though there are too many new things he did to try to explain them in paragraph form....so I'll just list them off one after another: =)
-Last night he made the notion he wanted to write something, so we gave him a pad of paper and pen. He wrote "Do you..." Pointed at me, and then wrote "want to watch a movie?" That made me laugh. Do I want to watch a movie?! What about you?! He knew I was staying with him, so I think he was already 'preparing' on what to do for the next couple of hours.
-I set up the portable DVD player, (w/ Rob's help) on a table that could move over his bed. It was set up a little too high at first while I was still messing with the cords, when I noticed he lifted his torso and head off of the bed a little bit to see the screen. I assured him that I'd adjust the height of the table, and he leaned backwards again. This definitely shows he's getting more strength!
-Throughout the night he wrote short notes such as, 'More water', 'Socks off', 'Boot off'....but the one that was most impressive to me was after I noticed him rubbing his belly. He motioned that he wanted to write, and he wrote that he had a little stomach ache. When I clarified that this is what he meant, he lifted up his right hand close to his chin and put his thumb and index finger close together as to indicate 'Just a little bit'. So cute. =) The nurse gave a little medication and it seemed to do the trick.
-Linda and Beth reported that he wrote other notes too like 'My nose itches' and 'Can you get a Q-tip'...for his ears. It's SUCH a relief to all of us that he can communicate with us in this way. They also said at one point he accidentally held the pen upside down. When they told this to him, he quickly flipped the pen over on his own with his right hand only. Talk about good motor skills!
-Rob has definitely surpassed asking Steve simple addition problems, and is now asking him cube roots. The rest of us couldn't help but laugh a little at first when he first started asking Steve these problems, but he honestly seems to know the answers! He taught Steve how to answer by holding up the correct amount of fingers with his right hand. If the number was greater than 5, he was to hold up two numbers separately. So then Rob asked him what the cube root of 512 is. Steve held up 5 fingers first, paused, then held up 3. Amazing! Shoot-I didn't even know that the answer was 8! Rob says Steve knew cube roots at the drop of a hat before...it's incredible that he's showing us he still does!
-Something that made me laugh earlier this morning was when my sister Jessie called on my phone. I answered in front of him and said "Steve, Jessie's on the phone!" He then lifted up his hand and forearm and waved back and forth. I was so shocked and said, "Steve says HI!! Oh my gosh!!"
-They plugged his trach today for the first time today in therapy too. You could tell it was a whole new feeling for him to completely breath through his mouth and nose. He did great at keeping his O2 level up and concentrated hard on making noise. Even though he wasn't quite ready to make a clear voice today, he definitely whispered a heavy "Yeah" in OT for more water. The docs are going to have his trach plugged more and more throughout the week.
-The last thing I feel I should mention that was pretty impressive was when the speech therapist asked him how old he is. He lifted up 2, then 3 fingers up separately. What's crazy is that he was hardly responding, if at all, at the time of his birthday on March 3rd. He definitely seems somewhat aware of how much time has gone by.
Ok, I could go on and on...but this is starting to turn into a short novel. I hope that this caught everyone up enough and that I can post soon with more great news!!
Xoxo's
Danielle
Monday, April 14, 2008
update #50 from Linda, Rob, and Beth
Tonight the four of us were in Steve's room and he indicated that he wanted to write something. The OT therapist had given us some foam that wraps around a pen, and we bought a gel pen that's easy to write with, so the task for Steve became easier. We also have gotten so good at predicting what he might say that he often doesn't have to write the whole word before we figure it out. For example, he might write a "c" and we guess "can" or "could". Well, tonight we were getting so good at that that he looked at us in total amazement that we were so brilliant. It was hilarious. It was almost as if he was thinking that we were smarter than he ever imagined! As soon as we guessed the correct word he gave us a thumbs up before going on to the next word.
In any case, the notes tonight were "Can you get me a wet washcloth", "Can you please take off my socks", and (our favorite) "Something is irritating my lower back". We were struck by the fact that he wrote in complete sentences and that he was so polite. The issue with his lower back was that a dressing had been put on his tailbone to protect the skin, had fallen off, then put back on incorrectly.
We are so thankful that we are able to communicate with him, and it clearly is a relief to him that he can tell us what's on his mind.
Steve is also aware of the things on his body that are strange to him, like his feeding tube and trach. Yesterday he wrote "I don't need the tube" in reference to the feeding tube, so we explained what it was and how long it would be there. Today he touched his trach and became upset. Again we explained what it did and told him it would be out soon, and that seemed to satisfy him. I'm sure those are challenging things to understand, and we're grateful that he can make sense of them.
Good night!
In any case, the notes tonight were "Can you get me a wet washcloth", "Can you please take off my socks", and (our favorite) "Something is irritating my lower back". We were struck by the fact that he wrote in complete sentences and that he was so polite. The issue with his lower back was that a dressing had been put on his tailbone to protect the skin, had fallen off, then put back on incorrectly.
We are so thankful that we are able to communicate with him, and it clearly is a relief to him that he can tell us what's on his mind.
Steve is also aware of the things on his body that are strange to him, like his feeding tube and trach. Yesterday he wrote "I don't need the tube" in reference to the feeding tube, so we explained what it was and how long it would be there. Today he touched his trach and became upset. Again we explained what it did and told him it would be out soon, and that seemed to satisfy him. I'm sure those are challenging things to understand, and we're grateful that he can make sense of them.
Good night!
Sunday, April 13, 2008
update #49 from Linda
Hello! Steve has had a restful day...spent some time sitting in a reclining chair, watching golf on TV, getting a foot massage from Beth, etc. He slept well last night and has done lots of well-deserved resting today. The only note he wrote was "take my helmet off" because it was annoying him when he was sitting in the chair. Grams and I couldn't read "helmet" and were guessing other things, so he pointed his finger at his head to help us figure it out! He also seems to be trying to talk more - we're anxious to see if Laura, his speech therapist, agrees. He makes some sounds at appropriate times, and other times just seems to be practicing using his voice. He seems so much more awake during the day, too. Even if he's watching TV with his eyes closed, he often isn't sleeping. We've also noticed that his right eye is opening more. I never thought watching TV could be good therapy, but if he lays in bed and looks up to watch it (the TV hangs from the ceiling), it almost forces his eye open.
A couple friends (Rachel and Shelley) stopped by with a recording of a comedy routine Steve loves (involving koalas and a frozen banana, among other things). If Steve had a voice right now he would have laughed out loud! It was so great to see his reaction. Soooooo if anyone knows of any funny CDs, movies, etc. that Steve likes, will you please let us know? Thanks.
Take care, everyone!
Love,
Linda
A couple friends (Rachel and Shelley) stopped by with a recording of a comedy routine Steve loves (involving koalas and a frozen banana, among other things). If Steve had a voice right now he would have laughed out loud! It was so great to see his reaction. Soooooo if anyone knows of any funny CDs, movies, etc. that Steve likes, will you please let us know? Thanks.
Take care, everyone!
Love,
Linda
Saturday, April 12, 2008
Update #48 from Beth
Hi guys,
I just wanted to write a short update to clarify what is going on with Steve right now, because it is very exciting! So apparently, yesterday morning, Steve was started on a medicine called Provigil, which is mainly used to treat narcolepsy. (Actually, the military has also expressed interest in using it to keep soldiers awake for long periods of time.) He got his first dose in the morning, and then around 7 pm, he became extremely active and agitated. He started moving his right arm a lot, and it looked as though he wanted to write something. So I handed him a pen and held up a sheet of paper, and he scribbled a word that looked like "pillow". After another couple of tries, he managed to write "pillow under..." and then when Mom said "feet?" he gave her the "thumbs up" sign.
He slept pretty well last night (Danielle, Mom and I stayed over), and then this morning, he wrote:
"more water" - Steve is usually really thirsty, because the moisturized air they're giving him goes through his trach and not his mouth
"take my socks off"
"they never put the IV in" - in response to a conversation Mom and I were having about his missing IV (actually, they just took it out because he doesn't need one anymore)
"can you give me the remote"
"I don't want to write" - poor guy!
Dad called Dr. Rotello at Suburban to tell him the good news, and Dr. Rotello indicated that the fact that Steve can write indicates a really high level of neurological function, and a good prognosis for the future. So we are all really excited.
Steve is also communicating a lot better now (more consistent "looking up" and "thumbs up" for "yes") and he recognized his occupational therapist, Patrick, when he came in this morning. He is also smiling now: he smiled at the "glapes" joke, as well as the "interrupting starfish" joke (I think that was from his friend Jess), and Uncle Don's mere presence in the room made him crack up...
Anyway, I think that's everything for now. Suffice it to say that Steve is doing great, and it seems like the Provigil really helped. We always knew he was "in there" - he was probably just too tired to show it sometimes!
More soon,
Beth
I just wanted to write a short update to clarify what is going on with Steve right now, because it is very exciting! So apparently, yesterday morning, Steve was started on a medicine called Provigil, which is mainly used to treat narcolepsy. (Actually, the military has also expressed interest in using it to keep soldiers awake for long periods of time.) He got his first dose in the morning, and then around 7 pm, he became extremely active and agitated. He started moving his right arm a lot, and it looked as though he wanted to write something. So I handed him a pen and held up a sheet of paper, and he scribbled a word that looked like "pillow". After another couple of tries, he managed to write "pillow under..." and then when Mom said "feet?" he gave her the "thumbs up" sign.
He slept pretty well last night (Danielle, Mom and I stayed over), and then this morning, he wrote:
"more water" - Steve is usually really thirsty, because the moisturized air they're giving him goes through his trach and not his mouth
"take my socks off"
"they never put the IV in" - in response to a conversation Mom and I were having about his missing IV (actually, they just took it out because he doesn't need one anymore)
"can you give me the remote"
"I don't want to write" - poor guy!
Dad called Dr. Rotello at Suburban to tell him the good news, and Dr. Rotello indicated that the fact that Steve can write indicates a really high level of neurological function, and a good prognosis for the future. So we are all really excited.
Steve is also communicating a lot better now (more consistent "looking up" and "thumbs up" for "yes") and he recognized his occupational therapist, Patrick, when he came in this morning. He is also smiling now: he smiled at the "glapes" joke, as well as the "interrupting starfish" joke (I think that was from his friend Jess), and Uncle Don's mere presence in the room made him crack up...
Anyway, I think that's everything for now. Suffice it to say that Steve is doing great, and it seems like the Provigil really helped. We always knew he was "in there" - he was probably just too tired to show it sometimes!
More soon,
Beth
What tomorrow will bring--Update #47 from Rob
Steve has written another note, "take my socks off",and tried to speak when the OT person he was working with walked in !
Stay tuned! Oh Yeah!!!
Rob
Stay tuned! Oh Yeah!!!
Rob
Positive thoughts and prayers--Update # 46 from Rob
I would like to again, thank all of you who read this blog for your positive thoughts and prayers for Steve. As I have said in previous posts, his family has seen them work.
Sometimes they manifest themselves in a hand squeeze, a "thumbs up = yes" sign, foot movement, legs that have rested for 7 weeks now showing movement, hand and arm movement enough to shake hands with those in the room or reach out to touch his girlfriends' arm and then grab her hand as if to never let go, a wave "goodbye" to a friend, Brent R, who was leaving and a wave 'hello" to his Mom and Sister, and, a hand written note saying "pillow under feet".
People, All of these things were accomplished by Steve last night!
We do not know what tomorrow will bring, but I have a feeling things will start to get interesting right about now.
You may wonder how I could leave with all this going on, it was actually very easy, I left Steve in the hands of the three women that love him the most, his Mom, Sister and Girlfriend..........
Besides that, someone had to post the good news!
Rob
Sometimes they manifest themselves in a hand squeeze, a "thumbs up = yes" sign, foot movement, legs that have rested for 7 weeks now showing movement, hand and arm movement enough to shake hands with those in the room or reach out to touch his girlfriends' arm and then grab her hand as if to never let go, a wave "goodbye" to a friend, Brent R, who was leaving and a wave 'hello" to his Mom and Sister, and, a hand written note saying "pillow under feet".
People, All of these things were accomplished by Steve last night!
We do not know what tomorrow will bring, but I have a feeling things will start to get interesting right about now.
You may wonder how I could leave with all this going on, it was actually very easy, I left Steve in the hands of the three women that love him the most, his Mom, Sister and Girlfriend..........
Besides that, someone had to post the good news!
Rob
Thursday, April 10, 2008
Update #45 from - Rob & Beth
It was a bit of a down day today. Beth reports Steve didn't sleep much last night due to some muscle pain so he was pretty tired and less responsive today in rehab.
However, one thing did 'make our day" so to speak.
Steve's uncle Dave came in to visit and the conversation turned to one of Steve's favorite jokes.
It goes like this;
A duck walks into a bar and asks the bartender, "you got any glapes?"
The bartender says," No."
The duck comes in the next day and asks the bartender the same question.
The bartender says " No I do not have any glapes, and if you ask me again, I will nail your beak to the bar."
The duck comes in the next day and asks the bartender, " Do you have any nails?"
The bartender says, "No." He then asks "you got any glapes?"
This little story extracted an "ear to ear smile" from Steve as witnessed by the nurse, Grams and me. It is the first and only smile we have seen since his injury. He obviously understood the joke and reacted to it.
We'll take what we can get!
Thanks to all of you!
Rob
However, one thing did 'make our day" so to speak.
Steve's uncle Dave came in to visit and the conversation turned to one of Steve's favorite jokes.
It goes like this;
A duck walks into a bar and asks the bartender, "you got any glapes?"
The bartender says," No."
The duck comes in the next day and asks the bartender the same question.
The bartender says " No I do not have any glapes, and if you ask me again, I will nail your beak to the bar."
The duck comes in the next day and asks the bartender, " Do you have any nails?"
The bartender says, "No." He then asks "you got any glapes?"
This little story extracted an "ear to ear smile" from Steve as witnessed by the nurse, Grams and me. It is the first and only smile we have seen since his injury. He obviously understood the joke and reacted to it.
We'll take what we can get!
Thanks to all of you!
Rob
Wednesday, April 9, 2008
Update #44 from Linda and Grams
Hello! Steve is resting so I thought I'd let you know what went on in OT today. He worked with "Patrick" who used a machine that stimulated the nerves in his arms and hands, with the hope that the nerves would keep firing even after the stimulation stopped. Steve was able to flip his right hand over numerous times, his left hand was more of a struggle (but he could flip it in one direction), make fists, straighten his fingers out (this was harder), and do a bicep curl with his right arm/hand. Patrick told Steve which muscles he was using and had him concentrate on each one as the tasks were done, which we thought was a wonderful technique. He had Steve take a tissue from him and raise it to "wipe" his mouth. Also to close his eyes tightly, then open them quickly. Of course, his right doesn't open much, but it's looking better in recent days. He also had him squeeze a ball with his right hand and do a bicep curl with it...that was quite amazing to watch...he really had to grip hard to hang on to that ball, but he did it!
After all that he managed to go to PT and spend time on the tilt table...they were very happy with what he was doing for them there, also. The people here really cheer him on, and now he's awake enough to hear their cheers.
His friend Mark visited the other day and suggested we bring his Ipod in. Unfortunately I threw it in the washing machine by mistake a couple days before Steve's accident! But Beth was able to access the music on his computer and burn a CD with some of his favorite songs. We brought that in today and he had a look of amazement on his face when the music started. Thanks for that idea, Mark!
We noticed today that he seemed upset when we were talking about getting a cup of coffee, so our thought is that we won't talk about food/drink or eat/drink in his room any more. Also, we talk to him rather than about him, and ask his opinions about things rather than speaking/deciding for him. It's wonderful to see him becoming so alert.
Have a good night, everyone!
Love, Linda and Grams (Mary)
After all that he managed to go to PT and spend time on the tilt table...they were very happy with what he was doing for them there, also. The people here really cheer him on, and now he's awake enough to hear their cheers.
His friend Mark visited the other day and suggested we bring his Ipod in. Unfortunately I threw it in the washing machine by mistake a couple days before Steve's accident! But Beth was able to access the music on his computer and burn a CD with some of his favorite songs. We brought that in today and he had a look of amazement on his face when the music started. Thanks for that idea, Mark!
We noticed today that he seemed upset when we were talking about getting a cup of coffee, so our thought is that we won't talk about food/drink or eat/drink in his room any more. Also, we talk to him rather than about him, and ask his opinions about things rather than speaking/deciding for him. It's wonderful to see him becoming so alert.
Have a good night, everyone!
Love, Linda and Grams (Mary)
Tuesday, April 8, 2008
Update #43 from Danielle
Hey everyone!
I'm happy to report that Steve had a very easy and relaxing night. He slept pretty much the entire night and it's becoming obvious he's getting on a more sleep/wake cycle. This, of course, makes it easier on everyone else as well!!
This morning he was greeted by two rehabilitation doctors. One of the doctors, Dr. Eckner, asked him first to squeeze his hand with his left. Steve did almost immediately. Even though we have seen Steve do this time and time again, he isn't always necessarily on 'top of his game' after he has just woken up. (Of course, that has to be the time the docs come in!) However, this morning was different. Dr. Eckner then asked him to look at Dr. Fitch and he looked directly at him. Steve wasn't even told that he was on his right side. Then Dr. Eckner told him to look at his girlfriend, and he slightly turned his head to the left, looked right at me and stopped. It was pretty exciting...he knows who we are! He was also asked to hold up two fingers, then four fingers, then two again...he did every command. Both docs commented it was the most 'awake' they had ever seen him. Linda then came in a short time later and decided to show me something new that he could do. She wrote "Wiggle your toes" on a piece of paper and told him to read it and do what it says. About 5 seconds later his toes started wiggling like crazy! It's incredible that he is not only showing us that he can follow commands and knows who we all are, but that he is reading too! He just has to figure out a way to express himself verbally. Like his dad keeps reminding him, "It'll all come back".
I decided to stay throughout the afternoon to witness all of his therapy sessions. Physical Therapy and Occupational Therapy first visited him at bedside. Then a quick nap later, he was moved to his wheelchair to visit the speech pathologist. I was definitely looking forward to that one the most, especially with all of his progress in speech the last couple of days. The speech pathologist first covered his trach with some tissue and asked him to make a 'voice'. After a couple breaths Steve let out a little wheeze of a sound. She applauded him and asked him to do it again but a little longer this time. He then let out a longer noise. I swear, I almost fell to my knees...I was so proud of him!! A little later on in the session she tried to get him to hold a marker in his right hand. He finally got a hold of it and she asked him to draw a circle on a sheet of paper. She showed him how to do it by motioning his hands in that direction and repeatedly told him to do it. All of a sudden, he drew a tiny circle on the paper. It was so great. =)
Even though his family and myself want to express every single uphill progress that he's making, I still feel as though I should comment that there are still times that he does not answer to commands. He often gets very tired and there are still, of course, some things he cannot do at this time. I'm pretty sure that everyone understands this, but it can be frusterating too after reading SO many great improvements on his behalf. It definitely makes you want to almost shake him and say "Wake up Steve! Talk to me!"...especially when we're all feeling as though he is just so close. With all that aside, there is no doubt he is making notable and huge strides to his recovery everyday. It is also becoming more and more evident already how many people know him throughout the hospital. The staff shares our excitement everyday and continuously makes us all feel he truly is touching a little piece of everyone's hearts.
I know you're all thinking that I couldn't possibly make this blog post any longer than I already have, but I'd like to say one last thing. I'd actually like to thank my Uncle Ronny who came in today to see Steve. My uncle too had a close headed injury 2 years ago and is now walking, talking, working, and doing everything he did before his injury. He is such a great inspiration and I just hope he realizes how fantastic it was that he could come and share his own story with Steve and his family. So thank you Uncle Ronny!!! <3
I wish you all the best...talk to you soon!
Danielle
I'm happy to report that Steve had a very easy and relaxing night. He slept pretty much the entire night and it's becoming obvious he's getting on a more sleep/wake cycle. This, of course, makes it easier on everyone else as well!!
This morning he was greeted by two rehabilitation doctors. One of the doctors, Dr. Eckner, asked him first to squeeze his hand with his left. Steve did almost immediately. Even though we have seen Steve do this time and time again, he isn't always necessarily on 'top of his game' after he has just woken up. (Of course, that has to be the time the docs come in!) However, this morning was different. Dr. Eckner then asked him to look at Dr. Fitch and he looked directly at him. Steve wasn't even told that he was on his right side. Then Dr. Eckner told him to look at his girlfriend, and he slightly turned his head to the left, looked right at me and stopped. It was pretty exciting...he knows who we are! He was also asked to hold up two fingers, then four fingers, then two again...he did every command. Both docs commented it was the most 'awake' they had ever seen him. Linda then came in a short time later and decided to show me something new that he could do. She wrote "Wiggle your toes" on a piece of paper and told him to read it and do what it says. About 5 seconds later his toes started wiggling like crazy! It's incredible that he is not only showing us that he can follow commands and knows who we all are, but that he is reading too! He just has to figure out a way to express himself verbally. Like his dad keeps reminding him, "It'll all come back".
I decided to stay throughout the afternoon to witness all of his therapy sessions. Physical Therapy and Occupational Therapy first visited him at bedside. Then a quick nap later, he was moved to his wheelchair to visit the speech pathologist. I was definitely looking forward to that one the most, especially with all of his progress in speech the last couple of days. The speech pathologist first covered his trach with some tissue and asked him to make a 'voice'. After a couple breaths Steve let out a little wheeze of a sound. She applauded him and asked him to do it again but a little longer this time. He then let out a longer noise. I swear, I almost fell to my knees...I was so proud of him!! A little later on in the session she tried to get him to hold a marker in his right hand. He finally got a hold of it and she asked him to draw a circle on a sheet of paper. She showed him how to do it by motioning his hands in that direction and repeatedly told him to do it. All of a sudden, he drew a tiny circle on the paper. It was so great. =)
Even though his family and myself want to express every single uphill progress that he's making, I still feel as though I should comment that there are still times that he does not answer to commands. He often gets very tired and there are still, of course, some things he cannot do at this time. I'm pretty sure that everyone understands this, but it can be frusterating too after reading SO many great improvements on his behalf. It definitely makes you want to almost shake him and say "Wake up Steve! Talk to me!"...especially when we're all feeling as though he is just so close. With all that aside, there is no doubt he is making notable and huge strides to his recovery everyday. It is also becoming more and more evident already how many people know him throughout the hospital. The staff shares our excitement everyday and continuously makes us all feel he truly is touching a little piece of everyone's hearts.
I know you're all thinking that I couldn't possibly make this blog post any longer than I already have, but I'd like to say one last thing. I'd actually like to thank my Uncle Ronny who came in today to see Steve. My uncle too had a close headed injury 2 years ago and is now walking, talking, working, and doing everything he did before his injury. He is such a great inspiration and I just hope he realizes how fantastic it was that he could come and share his own story with Steve and his family. So thank you Uncle Ronny!!! <3
I wish you all the best...talk to you soon!
Danielle
Monday, April 7, 2008
Update #42 from Linda and Grams
Hello! We just returned from an afternoon of therapy. The most interesting today was speech. That seems to be the place where they figure out ways to communicate with Steve, and then pass that info along to the PT and OT therapists. Today Steve clearly said "hi" and it also sounded like he said "yeah" although that was a little quieter. Laura, his speech therapist, wrote a note that said "look at your mom" and put it in front of him...he read it and followed that instruction! Then she wrote "close your eyes" and he read it and did that, too. So she made signs that said "yes", "no", and "I don't know" then asked questions and he looked at the appropriate sign to answer. She made an alphabet chart and we tried a few things with that, but she's going to fine tune that system as we go along. She made a sign with a couple numbers on it, then asked him what the answer was to a simple math problem...he was able to do that, too. Pretty exciting (and exhausting) stuff!
Yesterday around 5 PM we had an interesting experience with Steve. He lifted both his arms (the right one higher than the left) and looked at his hands as though he couldn't figure them out. We explained that they were his hands, and used his right one to touch parts of his face and tell him what they were. I showed him my hand and asked him to touch mine with his, and he did that several times. We showed him a picture of Danielle, and he reached for it and tried to hold it. Also showed him a picture from Muskegon and put his hand in a baggie of Lake Michigan sand (thanks, Deb!) and he moved his fingers around in it. Also tried to hold his Michigan hat. After about 20 minutes he seemed very tired, and his arms seemed to hurt, so we stopped. It was pretty amazing.
Take care, everyone!
Love, Linda and Grams
Yesterday around 5 PM we had an interesting experience with Steve. He lifted both his arms (the right one higher than the left) and looked at his hands as though he couldn't figure them out. We explained that they were his hands, and used his right one to touch parts of his face and tell him what they were. I showed him my hand and asked him to touch mine with his, and he did that several times. We showed him a picture of Danielle, and he reached for it and tried to hold it. Also showed him a picture from Muskegon and put his hand in a baggie of Lake Michigan sand (thanks, Deb!) and he moved his fingers around in it. Also tried to hold his Michigan hat. After about 20 minutes he seemed very tired, and his arms seemed to hurt, so we stopped. It was pretty amazing.
Take care, everyone!
Love, Linda and Grams
Saturday, April 5, 2008
update #41 from Linda
Hello! Today Steve had a shower (the first since his accident), which was a pretty huge operation but I'm sure felt great. Afterwards they covered him with a blanket that had been warmed, and he slept for hours. We got him into his wheelchair so he could take a ride down the hall to the lounge for a change of scenery, and to visit with friends. It's been nice to have a relaxing day!
He's been pretty sleepy for the past couple days. They're adjusting some of his meds to see if that helps.
Beth reports that he slept well last night, and that his left hand was doing some moving. There's a good chance that it's just reflexes, but it's more movement than we have seen.
Have a good night, everyone!
Love,
Linda
He's been pretty sleepy for the past couple days. They're adjusting some of his meds to see if that helps.
Beth reports that he slept well last night, and that his left hand was doing some moving. There's a good chance that it's just reflexes, but it's more movement than we have seen.
Have a good night, everyone!
Love,
Linda
Thursday, April 3, 2008
update #40 from Linda
Hello! Three very exciting things happened in speech today...thought you'd like to hear about them.
The first was that the therapist let Steve eat ice chips. He had to open his mouth, then close it, then move the ice around with his tongue and/or chew it, then swallow. He did a great job and I know it felt so good to him. Up until this point the only moisture he's gotten in his mouth is from a little sponge.
The second was that he's trying hard to speak and the therapist said she doesn't think it will be long before he does. She tried to have him say "yes" and eventually he (twice) said something that we both thought, without a doubt, was "yeah".
The third was that the therapist gave him a flashlight in his right hand, turned off the lights, and asked him to move it so that it shone on his mom's face. He did!
The rest of his day was busy and exhausting. But when they got him into bed this evening, he was wide awake and moving his head from side to side looking at things in his room, so we're hoping that he's getting used to his rehab schedule.
As always, thanks for keeping him in your thoughts and prayers. Have a good night!
Linda
The first was that the therapist let Steve eat ice chips. He had to open his mouth, then close it, then move the ice around with his tongue and/or chew it, then swallow. He did a great job and I know it felt so good to him. Up until this point the only moisture he's gotten in his mouth is from a little sponge.
The second was that he's trying hard to speak and the therapist said she doesn't think it will be long before he does. She tried to have him say "yes" and eventually he (twice) said something that we both thought, without a doubt, was "yeah".
The third was that the therapist gave him a flashlight in his right hand, turned off the lights, and asked him to move it so that it shone on his mom's face. He did!
The rest of his day was busy and exhausting. But when they got him into bed this evening, he was wide awake and moving his head from side to side looking at things in his room, so we're hoping that he's getting used to his rehab schedule.
As always, thanks for keeping him in your thoughts and prayers. Have a good night!
Linda
Wednesday, April 2, 2008
Update #39 from Linda and Rob
Hello! Hope all is well with all of you.
Today Steve slept through his morning OT and speech sessions after being given a pretty powerful pain killer last night. Spoke with the doctor today and he now will be given tylenol at regular intervals for pain...we'll try to avoid anything stronger. This evening he was having pain in his legs, so we used massage to help him, and turned on the tv for a distraction. Seemed to do the trick.
They are really working him hard. It wears him out, and is hard for us to watch sometimes, but so good for him. Today when the PT people sat him up and helped him balance his head, he was able to hold it there for quite some time. Then they tapped on it to un-balance it, and he often was able to keep it in position. He could also turn it very slightly to both sides. They have built a wheelchair for him that is long enough for his legs and supports his head. It keeps his back nice and straight and has an air cushion seat, so he sat in that in his room for a couple hours today. It's pretty amazing to watch them create/adjust those chairs. They have all sorts of tools and spare parts, and work hard and fast to build something that fits perfectly. The OT people had him hold a small cone in his right hand and then open his fingers and let it fall. That was a little different for him...usually someone is just asking him to move his body parts - not involve something else.
Tonight Beth asked him a couple questions and he shook his head (slightly) to say "no". That's a technique the speech pathologist likes - it's something you or I would just do naturally. She's all about making things like requests seem natural. For example, she asks Steve to introduce me to her, rather than just telling him to say "mom". He can't say that yet, but I look forward to that day!
Also tonight Beth asked him to move his pointer finger, thumb, etc. on his right hand, and he was able to do that. All good stuff!
It sounds like his day will involve morning rehab, a break at lunch time (even though he doesn't get to eat), then afternoon rehab. After that he collapses into bed for a couple hours of napping, we wake him up for a couple hours, then to sleep for the night. It's really important that he get his days and nights in order to make the best use of his rehab time...for the most part he's doing a good job with this.
His chest xray shows one small suspicious area, but the doctors don't think he has pneumonia - just some leftover junk that's working its way out. He's on antibiotics just in case, but he finally seems much better in the coughing/congestion department.
Good night everyone!
Linda and Rob
Today Steve slept through his morning OT and speech sessions after being given a pretty powerful pain killer last night. Spoke with the doctor today and he now will be given tylenol at regular intervals for pain...we'll try to avoid anything stronger. This evening he was having pain in his legs, so we used massage to help him, and turned on the tv for a distraction. Seemed to do the trick.
They are really working him hard. It wears him out, and is hard for us to watch sometimes, but so good for him. Today when the PT people sat him up and helped him balance his head, he was able to hold it there for quite some time. Then they tapped on it to un-balance it, and he often was able to keep it in position. He could also turn it very slightly to both sides. They have built a wheelchair for him that is long enough for his legs and supports his head. It keeps his back nice and straight and has an air cushion seat, so he sat in that in his room for a couple hours today. It's pretty amazing to watch them create/adjust those chairs. They have all sorts of tools and spare parts, and work hard and fast to build something that fits perfectly. The OT people had him hold a small cone in his right hand and then open his fingers and let it fall. That was a little different for him...usually someone is just asking him to move his body parts - not involve something else.
Tonight Beth asked him a couple questions and he shook his head (slightly) to say "no". That's a technique the speech pathologist likes - it's something you or I would just do naturally. She's all about making things like requests seem natural. For example, she asks Steve to introduce me to her, rather than just telling him to say "mom". He can't say that yet, but I look forward to that day!
Also tonight Beth asked him to move his pointer finger, thumb, etc. on his right hand, and he was able to do that. All good stuff!
It sounds like his day will involve morning rehab, a break at lunch time (even though he doesn't get to eat), then afternoon rehab. After that he collapses into bed for a couple hours of napping, we wake him up for a couple hours, then to sleep for the night. It's really important that he get his days and nights in order to make the best use of his rehab time...for the most part he's doing a good job with this.
His chest xray shows one small suspicious area, but the doctors don't think he has pneumonia - just some leftover junk that's working its way out. He's on antibiotics just in case, but he finally seems much better in the coughing/congestion department.
Good night everyone!
Linda and Rob
Tuesday, April 1, 2008
update #38 from Linda
Hello, everyone. Another busy day in rehab - OT, speech, PT in the morning...OT and PT in the afternoon. We are going places and meeting with people from 8 AM until 5 PM. So - visits in the evenings and weekends would be the best for now!
They're working with Steve on supporting his head, which is easier said than done, as he is wearing a heavy helmet while trying to do this. Had him on a tilt table today - his blood pressure did just fine, which is something they were concerned with. The speech therapist is trying to have him talk by covering his trach. He makes some sounds, which is a good first step. He's been dealing with quite a lot of pain as these muscles, etc. get used, but a regular dose of tylenol seems to take the edge off. Already today it was evident that the pain factor has lessened.
Some people are wondering if Steve is still considered to be in a coma...I asked that question today and was told the best way to describe it is to say that he is slowly emerging from one. I also asked about all the exercising they have him do - is that to help him come out of his coma, or to give him strength so that he'll be in better shape when he comes out of it. The answer was that he'll need the strength for later, but that studies have also shown that using his muscles reminds his brain that those muscles are part of him, so it can help him in that way, too. They often ask Steve to look at his hand, etc. so that he can make the connection that it belongs to him. I know this sounds a little strange, but I thought you might find it interesting.
Have a good night!
Linda
They're working with Steve on supporting his head, which is easier said than done, as he is wearing a heavy helmet while trying to do this. Had him on a tilt table today - his blood pressure did just fine, which is something they were concerned with. The speech therapist is trying to have him talk by covering his trach. He makes some sounds, which is a good first step. He's been dealing with quite a lot of pain as these muscles, etc. get used, but a regular dose of tylenol seems to take the edge off. Already today it was evident that the pain factor has lessened.
Some people are wondering if Steve is still considered to be in a coma...I asked that question today and was told the best way to describe it is to say that he is slowly emerging from one. I also asked about all the exercising they have him do - is that to help him come out of his coma, or to give him strength so that he'll be in better shape when he comes out of it. The answer was that he'll need the strength for later, but that studies have also shown that using his muscles reminds his brain that those muscles are part of him, so it can help him in that way, too. They often ask Steve to look at his hand, etc. so that he can make the connection that it belongs to him. I know this sounds a little strange, but I thought you might find it interesting.
Have a good night!
Linda
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