We all had a great weekend. Matt was up for leaving the mountain last night for the first time. We went for a short trip into town and picked up food & a movie. Today we had a big group of visitors (thanks for coming!) and Matt seemed quite content to stay awake and out of his room to spend time with everyone. It's really uplifting to spend 'ordinary' time with Matt.
We're counting down the days until Matt's surgery (next Tuesday), but he is quite worried about it. Today he told us he's anxious which was a completely new word. All of his therapists and nurses keep telling him how great he'll be and how much it will help, but it hasn't really sunk in yet.
Sunday, February 28, 2010
Wednesday, February 24, 2010
Snowed in
Thanks to all the snow, Matt has a much needed day off. He almost fell asleep at the breakfast table and has been sound asleep since then. I think it's so easy for all of us, including Matt himself, to push him too hard now that he's doing better. Yesterday he was exhausted to the point of tears before he would finally stop therapy and take a nap. We just have to work more on finding the right balance of work & rest for him.
Monday, February 22, 2010
Gaining strength
Matt's really working towards getting rid of his wheel chair - he's walking almost everywhere in the unit with his cane. Since speech therapy is upstairs, and always wipes him out, he's taking his wheelchair there, but that's about it. It's a hard balance to figure out how much to push him without completely wiping him out. This weekend he had to sleep quite a bit, but he's definitely getting stronger.
Every time that Matt gets in and out of bed, I've been helping him swing his legs up or down. Then on Friday, his PT made him do it himself, and without a problem, he swung his legs up and then figured out how to get his left leg under his right leg and swing them back down again. So now I pretty much only have to bring him his shoes and cane and stand next to him when he's walking. It's a good place to be.
Every time that Matt gets in and out of bed, I've been helping him swing his legs up or down. Then on Friday, his PT made him do it himself, and without a problem, he swung his legs up and then figured out how to get his left leg under his right leg and swing them back down again. So now I pretty much only have to bring him his shoes and cane and stand next to him when he's walking. It's a good place to be.
Thursday, February 18, 2010
Challenging the therapists
Matt has a 'new' PT who saw him his very first day here, but had 6 weeks of leave planned starting the next day. She came back yesterday and is amazed with Matt. Today they were trying to come up with things to challenge him and decided to work on his balance.
His OT & PT were working together and first just 'bumped' his shoulders while he was standing on both feet. Since he had no trouble with that, they quickly had to make it more difficult. By the end of a half hour session, they had him standing on a gym mat with foam pieces underneath it to make it an uneven surface. Then they added in a game of catch so that he was concentrating on more than one thing. He never once had trouble keeping his balance.
This afternoon we ditched the quad cane completely - now he'll be using just a regular cane and trying to walk more throughout the day. To finish off his last session today, he walked about 100 feet with no cane at all! I think it was just as difficult mentally as it was a physical challenge, but now he knows its possible.
His OT & PT were working together and first just 'bumped' his shoulders while he was standing on both feet. Since he had no trouble with that, they quickly had to make it more difficult. By the end of a half hour session, they had him standing on a gym mat with foam pieces underneath it to make it an uneven surface. Then they added in a game of catch so that he was concentrating on more than one thing. He never once had trouble keeping his balance.
This afternoon we ditched the quad cane completely - now he'll be using just a regular cane and trying to walk more throughout the day. To finish off his last session today, he walked about 100 feet with no cane at all! I think it was just as difficult mentally as it was a physical challenge, but now he knows its possible.
Tuesday, February 16, 2010
Tuesday
I've found it harder to write recently as there are fewer milestones for Matt to reach. We know he's getting better and especially building endurance, but he's really struggling with how slow things seem to be going. He's ready to have his surgery and reminded me today that it's 3 weeks away. I wasn't sure he understood the concept of time yet, so it was amazing to hear that.
We've made a book for speech therapy that is really helping with his communication. I wasn't sure how much he would like it, but he seems to understand its usefulness. There are pages of 15 words that cover everything from pain & medicine to foods/drinks to feelings to names of people he wants to recall. He keeps joking that its going to be 3 inches thick before we have everything covered. This week we've added an Olympics page and we spend his therapy time talking about what we watched the night before. He keeps the book in his chair and pulls it out whenever he gets stuck on a word he's trying to tell us. And just like when he used to point at numbers, he'll point at the word he wants even if he's saying a different word.
We've made a book for speech therapy that is really helping with his communication. I wasn't sure how much he would like it, but he seems to understand its usefulness. There are pages of 15 words that cover everything from pain & medicine to foods/drinks to feelings to names of people he wants to recall. He keeps joking that its going to be 3 inches thick before we have everything covered. This week we've added an Olympics page and we spend his therapy time talking about what we watched the night before. He keeps the book in his chair and pulls it out whenever he gets stuck on a word he's trying to tell us. And just like when he used to point at numbers, he'll point at the word he wants even if he's saying a different word.
Sunday, February 14, 2010
Looking good
We just went for a walk and one of the weekend LNA's who hadn't seen Matt walk before said, "wow, look at you!" and Matt replied, "Yeah, looking good!" I also overheard him tell someone this week that he was doing "not just good, phenomenal." He's still dealing with a lot of frustration about his progress, but he seems to understand a little about how he's doing.
Wednesday, February 10, 2010
Wednesday
Yesterday Matt stayed awake almost all day, which is quite the feat. It seemed like he was headed that way today, too, but now he's down for a nap. He was in rare form this morning joking with all his therapists and whenever he was goofing around, his right arm would move slightly! Then he'd try and watch it and he couldn't make it work again, but we definately saw it happen.
Matt's PT always has trouble thinking of ways to challenge him - everything she comes up with he handles after very little explanation. Now it seems that he's going to be working mostly on endurance. Her goal is to ditch the wheelchair in the next couple weeks! This means working more in his free time and on the weekends, which will be good for all of us.
Matt's PT always has trouble thinking of ways to challenge him - everything she comes up with he handles after very little explanation. Now it seems that he's going to be working mostly on endurance. Her goal is to ditch the wheelchair in the next couple weeks! This means working more in his free time and on the weekends, which will be good for all of us.
Monday, February 8, 2010
Monday
Last week was the first time Matt made it to all his therapy sessions and we were hoping that would continue. He's been really tired today, though, and slept through speech. He also slept a lot this weekend, but managed to stay awake for the Super Bowl. He laughed at most of the commercials and was excited about the Saints' win.
I got a call this morning from the hospital and Matt's surgery is scheduled for March 9. After all we talked about at his appointment, the surgeon decided that his skull is in good shape and that he would rather use the bone instead of a plastic replacement. At least this means that we don't have to go back for another CT and we have a surgery day.
I got a call this morning from the hospital and Matt's surgery is scheduled for March 9. After all we talked about at his appointment, the surgeon decided that his skull is in good shape and that he would rather use the bone instead of a plastic replacement. At least this means that we don't have to go back for another CT and we have a surgery day.
Thursday, February 4, 2010
Therapy update
Here's a general overview of where Matt is in his therapies and how he spends his days.
Physical therapy: He's walking every day with a quad cane and a belt that the therapist can hold onto in case he tips, but this rarely happens. Every once in awhile his right toe will catch on the floor as he's swinging his leg forward, but he can usually tell and corrects his balance. This morning he went up & down the stairs pretty quickly and figured out how to keep his right toes from catching on the lip of the steps. His therapist also got him on an exercise bike for 5 minutes, hoping to do this regularly and increase the time as his strength & endurance increases. In his afternoon session, he walked up and down the hallway, which is quite the obstacle course here with all the wheelchairs and lifts parked in the way. Then she had him stop at a spring-loaded door and figure out how to get in and out of the room with just one functioning arm that needs to hold a cane. His motor planning still amazes everyone he works with.
Occupational therapy: OT covers a lot of different things, so he has one full hour of OT each day. When they were doing 2-30 minute sessions, they would just get going and it would be time to stop, so this is working much better for him. Sometimes he'll work in his room and his therapist will help him with ADLs (activities of daily living) like how to dress himself, brush his teeth, and transfer to and from his wheelchair independently. Today they did some electric stimulation on his right arm which is sometimes paired with mirror therapy. He puts his right arm inside a tube that has a mirror on the outside. Then he moves his left arm and watches the reflection in the mirror which makes his brain think he's moving his right arm. Its crazy to watch and it seems to be making some muscles engage in his right arm, but it is a really hard workout for Matt, so they never do it for very long. He also spends part of every session working on his vision - they're really trying to get his eyes to work together, but his eyes are just not cooperating.
Speech therapy: This is definitely the area in which Matt struggles the most. He really likes his therapist, but he's usually not that excited about going to speech. He has to work so hard and it really wipes him out, so its better when he has 2 short sessions - one in the morning and one in the afternoon, but sometimes he'll have 45 minutes - 1 hour straight and that just ruins him for the rest of the day. Recently, they've started laying out 15 words and then showing Matt the corresponding pictures and he can point out the right word every time, and mostly read the words correctly, too. This has been kind of a breakthrough and something they're going to expand on for use outside of therapy sessions. We might get a program loaded onto our laptop that will have tabs full of common words Matt needs to access and then he can just point to them. If that doesn't work, we'll make boards or a book full of different pages of words. Either way, I think its going to make a huge difference in the amount of frustration he deals with when trying to communicate.
Therapeutic recreation: Once a week, Matt with have TR and so far, we've been going bowling. Basically, this session is a way to incorporate all of his therapies into a hobby or activity that Matt enjoys. He has to figure out how to get to the lanes, how to make everything work, and how to count pins. Hopefully he will be able to stand and bowl soon, without having to work around his wheelchair. He could do other things in TR like bike, cook, or swim, but so far he seems pretty happy with bowling.
Physical therapy: He's walking every day with a quad cane and a belt that the therapist can hold onto in case he tips, but this rarely happens. Every once in awhile his right toe will catch on the floor as he's swinging his leg forward, but he can usually tell and corrects his balance. This morning he went up & down the stairs pretty quickly and figured out how to keep his right toes from catching on the lip of the steps. His therapist also got him on an exercise bike for 5 minutes, hoping to do this regularly and increase the time as his strength & endurance increases. In his afternoon session, he walked up and down the hallway, which is quite the obstacle course here with all the wheelchairs and lifts parked in the way. Then she had him stop at a spring-loaded door and figure out how to get in and out of the room with just one functioning arm that needs to hold a cane. His motor planning still amazes everyone he works with.
Occupational therapy: OT covers a lot of different things, so he has one full hour of OT each day. When they were doing 2-30 minute sessions, they would just get going and it would be time to stop, so this is working much better for him. Sometimes he'll work in his room and his therapist will help him with ADLs (activities of daily living) like how to dress himself, brush his teeth, and transfer to and from his wheelchair independently. Today they did some electric stimulation on his right arm which is sometimes paired with mirror therapy. He puts his right arm inside a tube that has a mirror on the outside. Then he moves his left arm and watches the reflection in the mirror which makes his brain think he's moving his right arm. Its crazy to watch and it seems to be making some muscles engage in his right arm, but it is a really hard workout for Matt, so they never do it for very long. He also spends part of every session working on his vision - they're really trying to get his eyes to work together, but his eyes are just not cooperating.
Speech therapy: This is definitely the area in which Matt struggles the most. He really likes his therapist, but he's usually not that excited about going to speech. He has to work so hard and it really wipes him out, so its better when he has 2 short sessions - one in the morning and one in the afternoon, but sometimes he'll have 45 minutes - 1 hour straight and that just ruins him for the rest of the day. Recently, they've started laying out 15 words and then showing Matt the corresponding pictures and he can point out the right word every time, and mostly read the words correctly, too. This has been kind of a breakthrough and something they're going to expand on for use outside of therapy sessions. We might get a program loaded onto our laptop that will have tabs full of common words Matt needs to access and then he can just point to them. If that doesn't work, we'll make boards or a book full of different pages of words. Either way, I think its going to make a huge difference in the amount of frustration he deals with when trying to communicate.
Therapeutic recreation: Once a week, Matt with have TR and so far, we've been going bowling. Basically, this session is a way to incorporate all of his therapies into a hobby or activity that Matt enjoys. He has to figure out how to get to the lanes, how to make everything work, and how to count pins. Hopefully he will be able to stand and bowl soon, without having to work around his wheelchair. He could do other things in TR like bike, cook, or swim, but so far he seems pretty happy with bowling.
Tuesday, February 2, 2010
results
Our trip to Dartmouth went really well, although we don't have a surgery scheduled yet. His CT scan showed no more swelling and his surgeon is impressed with how he's doing. I probably shouldn't have looked at the picture, but I managed to not pass out and the doctor showed us how everything was doing.
The doctor recommended that we don't use the pieces of Matt's skull that they kept, but have a plastic replacement made instead. There is a high risk of infection using the bone and other difficulties associated with the multiple pieces. Matt will have to have a more detailed CT scan done (hopefully soon) so that they can make the plastic piece to fit his head exactly. This takes 2-3 weeks, so we're most likely looking at March for the surgery.
I was really hoping it would be sooner, but the news we got is good so I just have to remember that everything in this process takes awhile.
The doctor recommended that we don't use the pieces of Matt's skull that they kept, but have a plastic replacement made instead. There is a high risk of infection using the bone and other difficulties associated with the multiple pieces. Matt will have to have a more detailed CT scan done (hopefully soon) so that they can make the plastic piece to fit his head exactly. This takes 2-3 weeks, so we're most likely looking at March for the surgery.
I was really hoping it would be sooner, but the news we got is good so I just have to remember that everything in this process takes awhile.
Monday, February 1, 2010
Monday morning
Matt had a pretty good weekend - he's fighting headaches again and taking more medication which makes him unhappy. We're trying to stay on top of it before it gets unbearable, but he doesn't show discomfort too easily, and anytime a nurse checks with him he always says he's 'perfect.' I think it is body aches, as well, since he's moving so much more, but he just can't articulate the difference.
His PT left us with the stand up walker this weekend (pictured in last Monday's post) so he could stay in shape. Matt seemed a little nervous about having just me help him use the quad cane, so this walker is much more stable. The cane is helping him more with balance while engaging his leg muscles, but with the walker he can really cruise the hallways. His gate is much more fluid and natural since the wheels allow the walker to move with him.
We've noticed recently that Matt wants to tell us more and he is quite frustrated by his limited ability to communicate. We used to be able to guess what he's trying to tell us because it was pretty basic - something to eat, drink, a blanket, etc. Now he wants to bring up new subjects or discuss things in more detail. In therapy, he's been able to recall more and come up with words easier, but its going to be awhile before he can really communicate as well as he wants.
We're heading up to Dartmouth tomorrow morning for a CT scan and appointment with his surgeon, during which we will hopefully schedule the surgery to have Matt's skull flap put back. Here's hoping that everything is stabilized and he can have surgery soon! We've heard that once they've had that surgery, patients' rehab really takes off, so at the rate Matt's going already, he should be flying out of here soon.
His PT left us with the stand up walker this weekend (pictured in last Monday's post) so he could stay in shape. Matt seemed a little nervous about having just me help him use the quad cane, so this walker is much more stable. The cane is helping him more with balance while engaging his leg muscles, but with the walker he can really cruise the hallways. His gate is much more fluid and natural since the wheels allow the walker to move with him.
We've noticed recently that Matt wants to tell us more and he is quite frustrated by his limited ability to communicate. We used to be able to guess what he's trying to tell us because it was pretty basic - something to eat, drink, a blanket, etc. Now he wants to bring up new subjects or discuss things in more detail. In therapy, he's been able to recall more and come up with words easier, but its going to be awhile before he can really communicate as well as he wants.
We're heading up to Dartmouth tomorrow morning for a CT scan and appointment with his surgeon, during which we will hopefully schedule the surgery to have Matt's skull flap put back. Here's hoping that everything is stabilized and he can have surgery soon! We've heard that once they've had that surgery, patients' rehab really takes off, so at the rate Matt's going already, he should be flying out of here soon.
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