Hi! For those of you who were wondering about the "last minute" surgery....we thought we had an appointment to discuss possible surgery with neuro surgeons at noon on Friday. Thursday AM we found out that surgery had, in fact, been scheduled for 7:30 Friday AM! A bit of a scramble to get our bearings, have questions answered, and get x-rays and CT scan for Steve. But everything fell into place and we didn't really have time to worry, so it all worked out for the best.
He's been in heavy duty pain, both in his head and his abdomen (where the bone flap was stored). On a scale of 1-10, he came out of surgery reporting a 10 for his head. They kept him pretty drugged up, but his head seemed to clear a bit around 2:30 this morning. After that we could alternate pain meds (rather than double dosing him), he could write notes, was more patient, etc. I left the hospital a couple hours ago, and he reports head pain of 8 and abdominal pain of 7, which isn't great but is a big improvement. They plan to take the abdominal drain out tonight, and the head drain and head bandage (which is huge and tight) tomorrow. They're keeping him in the ICU again tonight because of the head drain. But we have watched him get better and better as the day went by, so I'm sure he'll be up and around before we know it. His PT (Tim), Speech Therapist (Laura) and Nurse (Christy) all came by to visit...so nice of them and encouraging to him.
One more huge step on the road to recovery!
Take care!
Linda
Saturday, May 31, 2008
Friday, May 30, 2008
Surgery Update from Rob
Steve's surgery went very well.
So well that he came out of the anesthetic and hour and a half early, in recovery. His head is wrapped tight and something is bothering him in his right ear, (like an itch you cannot scratch), but otherwise he is moving everything. He wrote a very " expletive deleted" note that indicated his displeasure. Can you imagine Beth guessing every letter as Steve wrote, and spelling "Get the f..u..c.............. thing out of my ear!!!" Positive prayers and thoughts worked again!!!
More to follow.
Thank You All
Rob
So well that he came out of the anesthetic and hour and a half early, in recovery. His head is wrapped tight and something is bothering him in his right ear, (like an itch you cannot scratch), but otherwise he is moving everything. He wrote a very " expletive deleted" note that indicated his displeasure. Can you imagine Beth guessing every letter as Steve wrote, and spelling "Get the f..u..c.............. thing out of my ear!!!" Positive prayers and thoughts worked again!!!
More to follow.
Thank You All
Rob
Thursday, May 29, 2008
surgery
Lots of prayers and positive energy, please...Steve is having surgery to replace his bone flap tomorrow (Friday) morning!!
Golf Update
Good Morning to all,
With all the advancements that Steve has shown, I feel funny about putting this post in, but I did want everyone to know of an upcoming deadline. First of all, thank you to all who have responded in so many ways to Uncle Dave's golf outing efforts. June 21st will be a great day. My only message is to remind everyone that May 31st is the deadline to register. Many verbal commitments have come in, but Uncle Dave is in need of firm commitments, either by contacting him directly or submiting your entry fee. Much has to be done in the days that follow May 31st, and a firm headcount is needed by course management in order to set up for a smooth running event. There, I'm done, and again thank you to all for your support of this wonderful event.
Sincerely,
Uncle Rick
PS: Uncle Dave can be reached at perk11435@yahoo.com for any additional questions and/or commitments
With all the advancements that Steve has shown, I feel funny about putting this post in, but I did want everyone to know of an upcoming deadline. First of all, thank you to all who have responded in so many ways to Uncle Dave's golf outing efforts. June 21st will be a great day. My only message is to remind everyone that May 31st is the deadline to register. Many verbal commitments have come in, but Uncle Dave is in need of firm commitments, either by contacting him directly or submiting your entry fee. Much has to be done in the days that follow May 31st, and a firm headcount is needed by course management in order to set up for a smooth running event. There, I'm done, and again thank you to all for your support of this wonderful event.
Sincerely,
Uncle Rick
PS: Uncle Dave can be reached at perk11435@yahoo.com for any additional questions and/or commitments
Tuesday, May 27, 2008
update #68 from Linda
Hi! The most exciting event today was that Steve walked using the "hard" machine once around the room in the morning and then again in the afternoon. I heard Tim asking the other therapists if they were giving him much help, and they said they were not. So, Tim and Mike each held onto one side of the gate (gait?) belt (around Steve's chest) and he walked about 10 steps that way - without holding onto anything! His knees were shaky and his feet weren't perfectly aligned, but he was walking and he was smiling, as we all were!
A friend of mine suggested "pixie sticks" as something to put in Steve's mouth and have him move it around, then swallow. Our OT therapist thought that was a good idea, and did it three times this morning. In the past this has been done with ice chips, which bothers his sensitive teeth. Pixie sticks were such a good idea, and his therapist said he handled it very well! He was also happy to taste something after all this time. :)
In speech the therapist read three words, had him write them down, then asked him to answer several questions, then write the words again. At that point I was struggling to remember them, but Steve did. Then she asked several more questions, and asked him to write the words AGAIN. Honestly, I couldn't remember them at all! Steve, however, had no problem. Amazing. They also sing songs sometimes and have Steve join in if and when he can. Today the therapist sang "happy birthday" and Steve said "Danielle" very clearly. He has a few weeks to practice, but it was a good start!
We had lots of company this weekend...thanks SO much everyone! Steve also got to spend time outside and loved it.
One more thing he was able to do this weekend was to type a note on the computer and send it to a friend, for the first time since his accident. A very short note which took a very long time to type, but a huge accomplishment!
I hope everyone had a nice Memorial Day.
Thanks for everything, and take care of yourselves!
Love,
Linda
A friend of mine suggested "pixie sticks" as something to put in Steve's mouth and have him move it around, then swallow. Our OT therapist thought that was a good idea, and did it three times this morning. In the past this has been done with ice chips, which bothers his sensitive teeth. Pixie sticks were such a good idea, and his therapist said he handled it very well! He was also happy to taste something after all this time. :)
In speech the therapist read three words, had him write them down, then asked him to answer several questions, then write the words again. At that point I was struggling to remember them, but Steve did. Then she asked several more questions, and asked him to write the words AGAIN. Honestly, I couldn't remember them at all! Steve, however, had no problem. Amazing. They also sing songs sometimes and have Steve join in if and when he can. Today the therapist sang "happy birthday" and Steve said "Danielle" very clearly. He has a few weeks to practice, but it was a good start!
We had lots of company this weekend...thanks SO much everyone! Steve also got to spend time outside and loved it.
One more thing he was able to do this weekend was to type a note on the computer and send it to a friend, for the first time since his accident. A very short note which took a very long time to type, but a huge accomplishment!
I hope everyone had a nice Memorial Day.
Thanks for everything, and take care of yourselves!
Love,
Linda
Sunday, May 25, 2008
Lobster Story (from Beth)
Hi guys,
I know I've kind of been the absent blogger lately, but I just wanted to quickly share one funny story about Steve that happened this morning. So last night I stayed over at the hospital with Steve, and this morning he woke up early and wanted to watch some TV before getting in the wheelchair, so we turned on ESPN. A couple of minutes into the show (which was about deep sea fishing) a commercial came on for Red Lobster's "jumbo shrimp buffet". I wasn't really paying attention, but then I heard this voice.
"Yummmmmm...."
I looked over and Steve was staring wide-eyed at the screen. I immediately felt terrible, and asked Steve if he wanted me to change the channel. He said no, and then signaled that he wanted to write something. So I got him a pen, and he wrote,
"No matter what I watch, I only see the Red Lobster commercial."
This would have been really sad, except that Steve was cracking up and so was I. He then wrote that he sees the little lobster from the Red Lobster logo everywhere: hopping around the room, hovering up by the TV, sitting next to him in bed, etc. He wrote that when he gets out of the hospital, the first place he's going to go is Red Lobster.
I was a little concerned about Steve's unending series of lobster visions, so I tentatively asked him if his friend the lobster had a name. And then out loud, as clear as could be and in a very serious voice, Steve said,
"He told me his name was Carl."
And then he cracked up again.
So even though Steve hasn't had any food by mouth for over three months now, he can still laugh about it, which to me is pretty darn amazing. And surely, as soon as he gets out, the first place we go will be Red Lobster so we can visit Carl and his little friends, the shrimp. :)
I know I've kind of been the absent blogger lately, but I just wanted to quickly share one funny story about Steve that happened this morning. So last night I stayed over at the hospital with Steve, and this morning he woke up early and wanted to watch some TV before getting in the wheelchair, so we turned on ESPN. A couple of minutes into the show (which was about deep sea fishing) a commercial came on for Red Lobster's "jumbo shrimp buffet". I wasn't really paying attention, but then I heard this voice.
"Yummmmmm...."
I looked over and Steve was staring wide-eyed at the screen. I immediately felt terrible, and asked Steve if he wanted me to change the channel. He said no, and then signaled that he wanted to write something. So I got him a pen, and he wrote,
"No matter what I watch, I only see the Red Lobster commercial."
This would have been really sad, except that Steve was cracking up and so was I. He then wrote that he sees the little lobster from the Red Lobster logo everywhere: hopping around the room, hovering up by the TV, sitting next to him in bed, etc. He wrote that when he gets out of the hospital, the first place he's going to go is Red Lobster.
I was a little concerned about Steve's unending series of lobster visions, so I tentatively asked him if his friend the lobster had a name. And then out loud, as clear as could be and in a very serious voice, Steve said,
"He told me his name was Carl."
And then he cracked up again.
So even though Steve hasn't had any food by mouth for over three months now, he can still laugh about it, which to me is pretty darn amazing. And surely, as soon as he gets out, the first place we go will be Red Lobster so we can visit Carl and his little friends, the shrimp. :)
Thursday, May 22, 2008
Update #66 from Linda
Hello! Just spoke with Rob and he said Steve had a great day in therapy. He did two laps on the "easy" machine that you saw in the video, and two laps on the "hard" machine. I haven't seen it, but apparently he has to support more of his body himself when walking with it. In Danielle's video, you can hear someone telling Steve to hold his head up. He hears that all the time and it's not an easy thing to do. They are looking into getting him a neck brace to help with this, so that his efforts can be more concentrated on moving his legs, etc. Also in PT, they're working on having him move from chair to table, etc. by standing up, moving his feet, and sitting down. I have no doubt that we'll soon be able to use this technique in his room; right now all transfers have to be done with a sling and a lift machine...pretty involved. What ends up happening is that you plan ahead to make as few transfers as possible, and he ends up spending lots of time in one place. When he can handle "pivot" transfers it will be so much easier for him to move around, and make his life nicer.
They've added a new med that helps with "tone" which is part of the issue with his left arm. It was started Tuesday night and yesterday his arm was better, but it seemed like the rest of his body was also more relaxed...not necessarily a good thing! Today was better, though. It's just a situation to keep an eye on and possibly adjust dosages.
His tentative discharge date in Rehab has been extended to June 18th! That's a result of his hard work and the progress he's showing.
Our current big issue is in regards to having his bone flap reattached. There are various opinions about this, and we're meeting with neuro docs on the 30th to decide what's best for Steve.
A swallow test is scheduled for next week. This will be interesting. We are so anxious for Steve to move along in this department, and be able to drink and eat. Last night he was sitting in bed, Beth held a cup of water, Steve held a "sponge on a stick" and he was able to dip it in the water, put it in his mouth, and swallow the water. Did it over and over. My job was to hold his head in the correct position so the water didn't go down "the wrong pipe". No problems at all. But if the OT therapists ask him to swallow, he says he can't "swallow on command"! Please say a little prayer about this. :)
Beth has helped him escape the hospital on two occasions, and he's had a blast. She has none of the parent fears like "what if his wheelchair rolls down the hill?" or "what if he gets too cold and winds up sick?" Both of them just laugh this off, roll their eyes at us, etc. Thanks, Beth! It does wonders for Steve emotionally.
The other thing that does wonders for him is to have his friends visit...remind him of good times and funny events...make plans with him for the future. We know how busy you all are, and how hard it is to see someone in the hospital, but your dedication to him says so much about you. So thanks from us and from Steve.
From all of us...have a nice weekend!
Love,
Linda
They've added a new med that helps with "tone" which is part of the issue with his left arm. It was started Tuesday night and yesterday his arm was better, but it seemed like the rest of his body was also more relaxed...not necessarily a good thing! Today was better, though. It's just a situation to keep an eye on and possibly adjust dosages.
His tentative discharge date in Rehab has been extended to June 18th! That's a result of his hard work and the progress he's showing.
Our current big issue is in regards to having his bone flap reattached. There are various opinions about this, and we're meeting with neuro docs on the 30th to decide what's best for Steve.
A swallow test is scheduled for next week. This will be interesting. We are so anxious for Steve to move along in this department, and be able to drink and eat. Last night he was sitting in bed, Beth held a cup of water, Steve held a "sponge on a stick" and he was able to dip it in the water, put it in his mouth, and swallow the water. Did it over and over. My job was to hold his head in the correct position so the water didn't go down "the wrong pipe". No problems at all. But if the OT therapists ask him to swallow, he says he can't "swallow on command"! Please say a little prayer about this. :)
Beth has helped him escape the hospital on two occasions, and he's had a blast. She has none of the parent fears like "what if his wheelchair rolls down the hill?" or "what if he gets too cold and winds up sick?" Both of them just laugh this off, roll their eyes at us, etc. Thanks, Beth! It does wonders for Steve emotionally.
The other thing that does wonders for him is to have his friends visit...remind him of good times and funny events...make plans with him for the future. We know how busy you all are, and how hard it is to see someone in the hospital, but your dedication to him says so much about you. So thanks from us and from Steve.
From all of us...have a nice weekend!
Love,
Linda
Tuesday, May 20, 2008
Update #65 from Danielle
Hey everyone!
As you know, Steve is now taking steps on his own in physical therapy. He is supported with a standing prop on wheels with the therapists by his side. It can be a little hard to picture this, so I decided to take a video of him this morning to share. He continues to amaze and impress me everyday with his full determination and patience. Go Steve!!! =)
PS: You may have to tilt your head to see the video more clear. Sorry!
As you know, Steve is now taking steps on his own in physical therapy. He is supported with a standing prop on wheels with the therapists by his side. It can be a little hard to picture this, so I decided to take a video of him this morning to share. He continues to amaze and impress me everyday with his full determination and patience. Go Steve!!! =)
PS: You may have to tilt your head to see the video more clear. Sorry!
Saturday, May 17, 2008
Update #64 from Rob
Hello everyone.
Steve continues to do well in Physical Therapy and his "strolls" around the room are becoming a part of every session. The fact that he can do this at all is testament to the positive thoughts and prayers being sent his way and to his own will to recover fully. His determination seems to lift the spirits of all in the room, patients and therapists alike. We hear comments like "there goes Steve again, an inspiration to us all". I sincerely do hope that his efforts serve to bolster not only Steve believing in himself, but others that watch him believing in themselves also. There is so much sorrow in that room. There are those that have little support, and have to go through therapy alone. Please take a moment and wish them best of luck too.
Steve also has made gains in speech. Lin and I thought we would shake up the routine a little by having him do the last speech therapy alone. Turns out all it took was to have Aunt Gail sit in. Steve was able to verbalize, "Hi Mom, Dad, Beth, Grandma, Aunt Gail " and of course "Hi Danielle". He also agreed with his therapist, Laura, when told what he had just done was "amazing" by repeating the word. He also learned to "air spell" and informed Laura and Aunt Gail that the team the Wings are playing is Dallas, by forming the letters with his right hand as if he was drawing them on an invisible chalkboard.
Another speech therapist worked with him Saturday and had him saying the names of the objects in the room. He verbalized items like "flashlight", etc. and was able to tell the therapist the name of his girlfriend clear enough for her to understand it. (She had never met Danielle nor knew her name).
The X-Rays of Steve's shoulders showed no concerns so further stretching and therapy should not be a problem. Glasses should be here next week.
The headaches continue but do not deter progress in therapy. There are thoughts that they may be the result of atmospheric pressure on the brain, due to the lack of the 'cushioning' of the cerebral spinal fluid (CSF) in an enclosed cranial cavity. What this means is it may be time to replace the bone flap. Lin and I have also made the doctors aware of the pain Steve has when he coughs. It appears that the bone flap may also be the cause of this as the area Steve points to when the pain occurs is on the edge of it. Whatever the decision, when you look back at what Steve has been through, this is merely a bump in the road to full recovery and has to be done at some time anyway.
On a lighter note, he no longer needs the TV remote he was given by rehab engineering...he can handle the regular remote now that his vision, strength, and coordination has improved. A definite lifestyle improvement! It also gives him access to the nurses' call button. Even though someone is always with him, we can now ask him to push the button...it's one more little step to being in control of things in his life.
Yesterday he was sitting in the recliner in his room and wrote that he was sliding down too far. Lin and her mom were there and talked about getting someone to help boost him up. Steve heard this and kicked the pillow out from under his feet, Lin held him under his arms and lifted, and he was able to push himself up and back into a more comfortable position. This may sound like a little thing, but it is really a huge improvement in his life as he loves that chair and keeping him in a comfortable position has always been a challenge!
Wishing you all the best.
Thanks,
Rob and Lin
Steve continues to do well in Physical Therapy and his "strolls" around the room are becoming a part of every session. The fact that he can do this at all is testament to the positive thoughts and prayers being sent his way and to his own will to recover fully. His determination seems to lift the spirits of all in the room, patients and therapists alike. We hear comments like "there goes Steve again, an inspiration to us all". I sincerely do hope that his efforts serve to bolster not only Steve believing in himself, but others that watch him believing in themselves also. There is so much sorrow in that room. There are those that have little support, and have to go through therapy alone. Please take a moment and wish them best of luck too.
Steve also has made gains in speech. Lin and I thought we would shake up the routine a little by having him do the last speech therapy alone. Turns out all it took was to have Aunt Gail sit in. Steve was able to verbalize, "Hi Mom, Dad, Beth, Grandma, Aunt Gail " and of course "Hi Danielle". He also agreed with his therapist, Laura, when told what he had just done was "amazing" by repeating the word. He also learned to "air spell" and informed Laura and Aunt Gail that the team the Wings are playing is Dallas, by forming the letters with his right hand as if he was drawing them on an invisible chalkboard.
Another speech therapist worked with him Saturday and had him saying the names of the objects in the room. He verbalized items like "flashlight", etc. and was able to tell the therapist the name of his girlfriend clear enough for her to understand it. (She had never met Danielle nor knew her name).
The X-Rays of Steve's shoulders showed no concerns so further stretching and therapy should not be a problem. Glasses should be here next week.
The headaches continue but do not deter progress in therapy. There are thoughts that they may be the result of atmospheric pressure on the brain, due to the lack of the 'cushioning' of the cerebral spinal fluid (CSF) in an enclosed cranial cavity. What this means is it may be time to replace the bone flap. Lin and I have also made the doctors aware of the pain Steve has when he coughs. It appears that the bone flap may also be the cause of this as the area Steve points to when the pain occurs is on the edge of it. Whatever the decision, when you look back at what Steve has been through, this is merely a bump in the road to full recovery and has to be done at some time anyway.
On a lighter note, he no longer needs the TV remote he was given by rehab engineering...he can handle the regular remote now that his vision, strength, and coordination has improved. A definite lifestyle improvement! It also gives him access to the nurses' call button. Even though someone is always with him, we can now ask him to push the button...it's one more little step to being in control of things in his life.
Yesterday he was sitting in the recliner in his room and wrote that he was sliding down too far. Lin and her mom were there and talked about getting someone to help boost him up. Steve heard this and kicked the pillow out from under his feet, Lin held him under his arms and lifted, and he was able to push himself up and back into a more comfortable position. This may sound like a little thing, but it is really a huge improvement in his life as he loves that chair and keeping him in a comfortable position has always been a challenge!
Wishing you all the best.
Thanks,
Rob and Lin
Tuesday, May 13, 2008
update #63 from Linda
Hello! Steve walked today. I can hardly believe I am able to write those words, but it's true. He supported his arms on a sort of tall table on wheels, held onto the handles, and started walking. The PT people told him what to do - "step forward with your right foot, lock your right knee, step forward with your left foot, etc." After a couple minutes of this he just got into the rhythm, and slowly walked two thirds of the way around the room! The place was going crazy, from PT people to doctors to other patients. Amazing.
One of the other patients (and one of Steve's biggest cheerleaders) is a man named Ron who lost an arm and a leg in a motorcycle accident. He's pretty loud and very funny, and Steve loves being around him. Today Ron told me that when he was hurt he just couldn't believe that he was the person laying there so injured. But when his friends and family surrounded him and supported him, it helped him come to terms with what had happened to him and made him believe that everything would be OK. It was interesting to hear that from the perspective of someone who had been through such a challenging situation. I'm sure Steve is thanking every one of you for your support and your love!
After therapy we got on the computer, which we had done before without much success. But this time he was able to read a couple messages (from his friend Ryan and from Uncle Rick) and could maneuver the mouse a little and click on a few things on Facebook. I think part of his success was due to increased control over his right hand, and part was due to better vision. His right eye is open so much more now and tracking better He also decided to wear his glasses even though they're uncomfortable. I'm sure that helped.
Speaking of glasses, someone from the Kellogg Eye Institute in Ann Arbor is coming tomorrow AM with a selection of frames and they're going to make him a new pair. We were able to track down his latest prescription...he had his eyes examined last fall in Las Vegas when he lost his contact and didn't have any spares...a long story! But that place faxed us his prescription, the Kellogg people were kind enough to bring frames to the hospital, and Danielle (yeah!) is going to help him order his new glasses. His vision problems could involve more than just glasses, but it's a good first step.
The doctors decided to x-ray his shoulders today to see if bone spurs might be forming in his left one. It gives him significant pain which could be "tone" - something connected to his brain injury - or it could be something else. Just checking this out. We'll let you know the results.
Goodnight, everyone, and take care!
Love,
Linda
One of the other patients (and one of Steve's biggest cheerleaders) is a man named Ron who lost an arm and a leg in a motorcycle accident. He's pretty loud and very funny, and Steve loves being around him. Today Ron told me that when he was hurt he just couldn't believe that he was the person laying there so injured. But when his friends and family surrounded him and supported him, it helped him come to terms with what had happened to him and made him believe that everything would be OK. It was interesting to hear that from the perspective of someone who had been through such a challenging situation. I'm sure Steve is thanking every one of you for your support and your love!
After therapy we got on the computer, which we had done before without much success. But this time he was able to read a couple messages (from his friend Ryan and from Uncle Rick) and could maneuver the mouse a little and click on a few things on Facebook. I think part of his success was due to increased control over his right hand, and part was due to better vision. His right eye is open so much more now and tracking better He also decided to wear his glasses even though they're uncomfortable. I'm sure that helped.
Speaking of glasses, someone from the Kellogg Eye Institute in Ann Arbor is coming tomorrow AM with a selection of frames and they're going to make him a new pair. We were able to track down his latest prescription...he had his eyes examined last fall in Las Vegas when he lost his contact and didn't have any spares...a long story! But that place faxed us his prescription, the Kellogg people were kind enough to bring frames to the hospital, and Danielle (yeah!) is going to help him order his new glasses. His vision problems could involve more than just glasses, but it's a good first step.
The doctors decided to x-ray his shoulders today to see if bone spurs might be forming in his left one. It gives him significant pain which could be "tone" - something connected to his brain injury - or it could be something else. Just checking this out. We'll let you know the results.
Goodnight, everyone, and take care!
Love,
Linda
Monday, May 12, 2008
Dear Steve,
You have given so much to each of us as we have followed your journey. New hope, new ways of looking at life, new focus on what is truly important and most of all a new understanding of the human spirit. For all that you have given us we are thankful beyond words. Now it is our turn to give back a little to you, to honor you for what you have brought into each of our lives. Uncle Dave has put together a special golf outing to allow us an opportunity to play the game you love for no other reason than to show you how much we all care. For anyone interested in participating in this event the details can be found at (stevesscramble.blogspot.com). The event takes place on June 21st and all are welcome. Steve, I cannot write a note to you without tearing up. The power in the message that you bring to us all is almost overwhelming. This is our turn to thank you for that. Uncle Dave had the idea, now we all can play our part.
Thanks and be strong Steve,
Love,
Uncle Rick
PS: Uncle Dave can be reached at perk11435@yahoo.com for any additional questions
You have given so much to each of us as we have followed your journey. New hope, new ways of looking at life, new focus on what is truly important and most of all a new understanding of the human spirit. For all that you have given us we are thankful beyond words. Now it is our turn to give back a little to you, to honor you for what you have brought into each of our lives. Uncle Dave has put together a special golf outing to allow us an opportunity to play the game you love for no other reason than to show you how much we all care. For anyone interested in participating in this event the details can be found at (stevesscramble.blogspot.com). The event takes place on June 21st and all are welcome. Steve, I cannot write a note to you without tearing up. The power in the message that you bring to us all is almost overwhelming. This is our turn to thank you for that. Uncle Dave had the idea, now we all can play our part.
Thanks and be strong Steve,
Love,
Uncle Rick
PS: Uncle Dave can be reached at perk11435@yahoo.com for any additional questions
update #62 from Linda
Hello!
I hope everyone had a nice Mother's Day. When I walked into Steve's room Sunday morning he looked at me very intently and whispered "Happy Mother's Day". You could tell it took lots of effort, but he wanted to make sure I heard it, and I did! He also said it later when it was time for me to leave for the day.
Beth had the overnight and she and Steve had a nice morning. She always massages/lotions his feet, which he loves. They also played a couple games of UNO, and spoke with doctors about getting permission to take a walk outside (off hospital grounds). When I arrived a nurse asked me about the "permission slip" that was on Steve's chart and I didn't know what that was about. Steve wrote "ask Beth" so I did and she filled me in. He was very excited about it, although the weather decided not to cooperate. He was OK with that, and we'll try again another day! UNO was painfully slow, but Beth has so much patience...I know he enjoyed playing it with her.
Steve was so alert - probably more than I've ever seen him. He's getting really good at dealing with his own itches, controlling the remote, writing notes, and even signing his name (in cursive!). He seems less frustrated with his left arm, and is getting better at doing things one-handed. He is getting better at relaxing his left one, and they've decided not to use meds to relax it at the present time, as they want to see what he can do on his own. He is also getting so much stronger, and helping lift himself up as he gets dressed, the sling is positioned, etc. Holds the railing to keep himself on his side so we can wash or massage his back. Last night the tech who was helping him get ready for bed was AMAZED at the progress he's made in the last week, when he last saw him.
He has had headaches all week, which we're keeping an eye on as far as time of day, severity, activity level, etc. Rob hopes to connect with the neuro doctors soon to discuss this. Steve describes the pain as a 4 or 5 on a scale of 1-10, and motrin gets rid of them. There may be a bone flap connection...more on this as we figure it out.
Have a good Monday, everyone!
Love,
Linda
I hope everyone had a nice Mother's Day. When I walked into Steve's room Sunday morning he looked at me very intently and whispered "Happy Mother's Day". You could tell it took lots of effort, but he wanted to make sure I heard it, and I did! He also said it later when it was time for me to leave for the day.
Beth had the overnight and she and Steve had a nice morning. She always massages/lotions his feet, which he loves. They also played a couple games of UNO, and spoke with doctors about getting permission to take a walk outside (off hospital grounds). When I arrived a nurse asked me about the "permission slip" that was on Steve's chart and I didn't know what that was about. Steve wrote "ask Beth" so I did and she filled me in. He was very excited about it, although the weather decided not to cooperate. He was OK with that, and we'll try again another day! UNO was painfully slow, but Beth has so much patience...I know he enjoyed playing it with her.
Steve was so alert - probably more than I've ever seen him. He's getting really good at dealing with his own itches, controlling the remote, writing notes, and even signing his name (in cursive!). He seems less frustrated with his left arm, and is getting better at doing things one-handed. He is getting better at relaxing his left one, and they've decided not to use meds to relax it at the present time, as they want to see what he can do on his own. He is also getting so much stronger, and helping lift himself up as he gets dressed, the sling is positioned, etc. Holds the railing to keep himself on his side so we can wash or massage his back. Last night the tech who was helping him get ready for bed was AMAZED at the progress he's made in the last week, when he last saw him.
He has had headaches all week, which we're keeping an eye on as far as time of day, severity, activity level, etc. Rob hopes to connect with the neuro doctors soon to discuss this. Steve describes the pain as a 4 or 5 on a scale of 1-10, and motrin gets rid of them. There may be a bone flap connection...more on this as we figure it out.
Have a good Monday, everyone!
Love,
Linda
Tuesday, May 6, 2008
Update #61 from Linda
Just a couple little things about today...
In PT when Steve is being moved on or off his wheelchair (and to or from a machine, mat, etc. for therapy) it normally takes 2 therapists to help him with the transfer. Today it only required one person, since he was able to put his feet on the floor and help support himself during the transfers. A huge accomplishment!
In speech his therapist did a little testing (will do more tomorrow) and commented that they've not been able to find any areas where he has issues mentally. She explained to Steve that people with head injuries usually struggle with some things and wondered if he had noticed anything that was of concern to him. His answer was "no"!
His friend Steve visited today and we were talking about the price of gas. You should have seen our Steve's face when I told him it cost me $91 to fill up the van yesterday. Complete horror!
We talked about the fact that his skull is in his abdomen, and I told him that often they freeze things like that instead. He thought it was hilarious!
I asked him if he had any questions for me (thinking that he'd wonder things about his accident, etc.) and he wrote "how is work?" Such a normal conversation.
He said SO many words today. I would definitely remember today as the day he started talking. Not always easy to understand, but we could always figure it out.
All in all, a good day. :)
Love,
Linda
In PT when Steve is being moved on or off his wheelchair (and to or from a machine, mat, etc. for therapy) it normally takes 2 therapists to help him with the transfer. Today it only required one person, since he was able to put his feet on the floor and help support himself during the transfers. A huge accomplishment!
In speech his therapist did a little testing (will do more tomorrow) and commented that they've not been able to find any areas where he has issues mentally. She explained to Steve that people with head injuries usually struggle with some things and wondered if he had noticed anything that was of concern to him. His answer was "no"!
His friend Steve visited today and we were talking about the price of gas. You should have seen our Steve's face when I told him it cost me $91 to fill up the van yesterday. Complete horror!
We talked about the fact that his skull is in his abdomen, and I told him that often they freeze things like that instead. He thought it was hilarious!
I asked him if he had any questions for me (thinking that he'd wonder things about his accident, etc.) and he wrote "how is work?" Such a normal conversation.
He said SO many words today. I would definitely remember today as the day he started talking. Not always easy to understand, but we could always figure it out.
All in all, a good day. :)
Love,
Linda
Update #60 from Rob
Hello everyone,
I cannot believe it has been 5 days since the last update. Sorry for the delay.
Things have been progressing is the familiar painfully slow but positive direction.
Steve has reached what we call another level of "awareness" and at times seems to be a little more frustrated with his situation. What is truly amazing is his ability to channel that frustration into his workouts in therapy. Just yesterday, the morning therapy was really grueling. They had him on his belly, holding his head up, helmet on, off the edge of a raised mat. Try that some time yourself! They also had him try some push-ups. We could see him trying and the right arm actually raised his body a little. They also have determined that since he has been laid up for so long that his shoulders were coming forward and his spine was curving. They have treated this with other exercises and have corrected the issue. The point of this discussion is that throughout all of this exercise, Steve always gives a "thumbs up" for doing more things. The tenacity, determination, drive --- that Steve exhibits is a lesson for us all.
We have also used the lift mechanism to do "pull ups" in bed. I raise the lift bar until his arms are at a distance that Steve says is comfortable. He then pulls himself to an almost upright sitting position. This helps in getting Steve's shirt on in the morning. Steve can also dig his heels into the bed and push himself up and lift his backside slightly off of the bed which helps in getting his sweatpants up. With his right arm, he can actually pull his body on its left side which aids in repositioning him throughout the day.
The trach bandage was removed yesterday and the site appears totally healed. We got a bit of a scare, however, as when the dressing was removed, the gauze was green in color. We think something like shampoo (head and shoulders-blue) leaked under the tape and caused this because it was the gauze only and not the wound that had this color.
Steve continually amazes his Speech therapist also. While we know his mind was never an issue, she has to document it by testing. Steve's short term memory was tested yesterday and of course he passed doing better than normal non injured people. This is really good news because it allows something called the "FIM" number to be increased, which shows continual positive progress. He also is mouthing more words and routinely says "HI", "NO', "Yeah", which means that he is gaining more control of his tongue. This is another positive step towards getting a taste of real food!!
We were also able to find out, with the help on one of the great nurses there, that the calculations for the amount of calories Steve is getting were slightly off. It had to do with the amount of hours he was being fed. We'll see if we can "fatten",(sorry Steve-poor choice of words), him up a bit now.
We were also able to obtain Steve's last eyeglass prescription. When Steve was examined by the Neuro-ophthalmologists, they requested this. While their examination found no damage to either optic nerve that doesn't mean there isn't a field of vision issue. They plan to compare his current (old) set of glasses to the new prescription and make a decision as to whether they need further testing or just a pair of glasses made to the latest prescription. By the way, Steve's right eye is almost fully open now and tracks with the left.
As our family has said before, there is no doubt that Steve's progress has been the result, in part, of all of the positive thoughts and prayers directed his way, and now we can add, his own determination. I'll close with a statement from Dr. Armonda
"I think dramatic improvements are still to occur".
Hope all is well.
Rob
I cannot believe it has been 5 days since the last update. Sorry for the delay.
Things have been progressing is the familiar painfully slow but positive direction.
Steve has reached what we call another level of "awareness" and at times seems to be a little more frustrated with his situation. What is truly amazing is his ability to channel that frustration into his workouts in therapy. Just yesterday, the morning therapy was really grueling. They had him on his belly, holding his head up, helmet on, off the edge of a raised mat. Try that some time yourself! They also had him try some push-ups. We could see him trying and the right arm actually raised his body a little. They also have determined that since he has been laid up for so long that his shoulders were coming forward and his spine was curving. They have treated this with other exercises and have corrected the issue. The point of this discussion is that throughout all of this exercise, Steve always gives a "thumbs up" for doing more things. The tenacity, determination, drive --- that Steve exhibits is a lesson for us all.
We have also used the lift mechanism to do "pull ups" in bed. I raise the lift bar until his arms are at a distance that Steve says is comfortable. He then pulls himself to an almost upright sitting position. This helps in getting Steve's shirt on in the morning. Steve can also dig his heels into the bed and push himself up and lift his backside slightly off of the bed which helps in getting his sweatpants up. With his right arm, he can actually pull his body on its left side which aids in repositioning him throughout the day.
The trach bandage was removed yesterday and the site appears totally healed. We got a bit of a scare, however, as when the dressing was removed, the gauze was green in color. We think something like shampoo (head and shoulders-blue) leaked under the tape and caused this because it was the gauze only and not the wound that had this color.
Steve continually amazes his Speech therapist also. While we know his mind was never an issue, she has to document it by testing. Steve's short term memory was tested yesterday and of course he passed doing better than normal non injured people. This is really good news because it allows something called the "FIM" number to be increased, which shows continual positive progress. He also is mouthing more words and routinely says "HI", "NO', "Yeah", which means that he is gaining more control of his tongue. This is another positive step towards getting a taste of real food!!
We were also able to find out, with the help on one of the great nurses there, that the calculations for the amount of calories Steve is getting were slightly off. It had to do with the amount of hours he was being fed. We'll see if we can "fatten",(sorry Steve-poor choice of words), him up a bit now.
We were also able to obtain Steve's last eyeglass prescription. When Steve was examined by the Neuro-ophthalmologists, they requested this. While their examination found no damage to either optic nerve that doesn't mean there isn't a field of vision issue. They plan to compare his current (old) set of glasses to the new prescription and make a decision as to whether they need further testing or just a pair of glasses made to the latest prescription. By the way, Steve's right eye is almost fully open now and tracks with the left.
As our family has said before, there is no doubt that Steve's progress has been the result, in part, of all of the positive thoughts and prayers directed his way, and now we can add, his own determination. I'll close with a statement from Dr. Armonda
"I think dramatic improvements are still to occur".
Hope all is well.
Rob
Thursday, May 1, 2008
Update #59 from Linda
Hello! Just returned from the hospital (Beth has the overnight) and thought I'd let you know a few things that are happening with Steve.
One pretty amazing thing is that he likes going to therapy, especially physical therapy. It's such hard, and often painful, work, but he truly seems to look forward to it. He also likes wearing a shoulder brace they got for him, and a brace for his left hand. I really think he understands that these things will help him get well, and he's glad to take them on. The other day I took him to PT a little early and pointed out some people with other injuries...some who can't (and probably never will) move their legs, hands, etc. I commented that he's so lucky to have an injury like he does compared to some others, since he'll eventually be able to move everything again. His eyes got really wide and he gave me a "thumbs up"...it was quite a moment.
Communication is a combination of hand signals, eye signals, and writing. There's not much we can't figure out. Tonight he wrote "this means higher" then pointed at the ceiling. It turns out that he was trying to scratch the top of his head and couldn't reach...wanted us to lift his arm higher so that he could! So now we know what that signal means! Rehab engineering gave him a computer loaded with a program that scans letters and he clicks on them to write messages. Writing with a pen and paper is much faster for him, but it's fun to use the computer and works on hand/eye coordination. Beth put a program on his computer where he can use a cordless mouse to click on letters and phrases to write messages...we haven't had much time to try it out yet, but plan to this weekend. We also used the computer in the dayroom and checked his email and got on facebook. He had to write his passwords and let me enter them for him...it was obvious that he didn't want to do this, but agreed to after I assured him I wouldn't snoop! I had to do all the clicking, etc. but he enjoyed sitting in front of a computer again.
As Danielle said, we are more than thrilled with the news that our discharge date has been moved farther into the future. I explained this to Steve and told him that it's because he's working so hard and making such good progress. He understands that the goal is to get him well and then home.
You know we've mentioned that Steve's surgeon also operated on Bob Woodruff. Well, Bob Woodruff spoke at UofM commencement last weekend, and Steve's speech therapist arranged for him to sign a book for Steve. She also took the book when she went to Washington, D.C. last week to pick up her daughter, called Dr. Armonda (the surgeon), spoke with him, and then met him so that he could also sign the book and pose for a picture. She presented this to Steve on Tuesday. It was such an amazing act of kindness on her part, and the book is a treasure Steve will have forever. Thank you, Laura! Here are the messages that were written: "To Steve and Family - It has been an honor to be part of Steve's care! Through the love of his family, skill of his therapists, and support of friends we look forward to his continued recovery. Dr. Rocco Armonda" and "To Steve and Family - In so many ways we are now brothers, TBI brothers. This is a long road to recovery but it happens. Keep up the fight. Yours, Bob Woodruff (and Rocco is the best surgeon!)"
One other thing that's on my mind is the overwhelming gratitude we feel for all of you who take the time to read this and offer support in so many ways. This is a life changing and exhausting journey and we truly gain strength from you. Every thought, prayer, and other kindness is treasured and appreciated by all of us.
Take care of yourselves!
Love,
Linda
One pretty amazing thing is that he likes going to therapy, especially physical therapy. It's such hard, and often painful, work, but he truly seems to look forward to it. He also likes wearing a shoulder brace they got for him, and a brace for his left hand. I really think he understands that these things will help him get well, and he's glad to take them on. The other day I took him to PT a little early and pointed out some people with other injuries...some who can't (and probably never will) move their legs, hands, etc. I commented that he's so lucky to have an injury like he does compared to some others, since he'll eventually be able to move everything again. His eyes got really wide and he gave me a "thumbs up"...it was quite a moment.
Communication is a combination of hand signals, eye signals, and writing. There's not much we can't figure out. Tonight he wrote "this means higher" then pointed at the ceiling. It turns out that he was trying to scratch the top of his head and couldn't reach...wanted us to lift his arm higher so that he could! So now we know what that signal means! Rehab engineering gave him a computer loaded with a program that scans letters and he clicks on them to write messages. Writing with a pen and paper is much faster for him, but it's fun to use the computer and works on hand/eye coordination. Beth put a program on his computer where he can use a cordless mouse to click on letters and phrases to write messages...we haven't had much time to try it out yet, but plan to this weekend. We also used the computer in the dayroom and checked his email and got on facebook. He had to write his passwords and let me enter them for him...it was obvious that he didn't want to do this, but agreed to after I assured him I wouldn't snoop! I had to do all the clicking, etc. but he enjoyed sitting in front of a computer again.
As Danielle said, we are more than thrilled with the news that our discharge date has been moved farther into the future. I explained this to Steve and told him that it's because he's working so hard and making such good progress. He understands that the goal is to get him well and then home.
You know we've mentioned that Steve's surgeon also operated on Bob Woodruff. Well, Bob Woodruff spoke at UofM commencement last weekend, and Steve's speech therapist arranged for him to sign a book for Steve. She also took the book when she went to Washington, D.C. last week to pick up her daughter, called Dr. Armonda (the surgeon), spoke with him, and then met him so that he could also sign the book and pose for a picture. She presented this to Steve on Tuesday. It was such an amazing act of kindness on her part, and the book is a treasure Steve will have forever. Thank you, Laura! Here are the messages that were written: "To Steve and Family - It has been an honor to be part of Steve's care! Through the love of his family, skill of his therapists, and support of friends we look forward to his continued recovery. Dr. Rocco Armonda" and "To Steve and Family - In so many ways we are now brothers, TBI brothers. This is a long road to recovery but it happens. Keep up the fight. Yours, Bob Woodruff (and Rocco is the best surgeon!)"
One other thing that's on my mind is the overwhelming gratitude we feel for all of you who take the time to read this and offer support in so many ways. This is a life changing and exhausting journey and we truly gain strength from you. Every thought, prayer, and other kindness is treasured and appreciated by all of us.
Take care of yourselves!
Love,
Linda
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