Happy Halloween to you all. We didn't pass out candy this year, as the doorbell ringing sends the dog into barking hysterics, which startles Steve. Despite the fact that our lights were off, several groups of kids rang the bell and we wound up with a plate of spagetti launched in the family room! Nothing to do but laugh about it!
It hardly seems like 10 days since the last update and 21 since Steve came home. We are starting to get into a routine and it feels good to do the same thing the same way, more than once. As Lin mentioned, Steve and I travel to Med-Rehab in Ann Arbor Monday thru Thursday for therapy. We are trying to get him to see Speech, OT and PT for an hour each day 4X per week. He was getting 90 minutes of OT and PT per day in the hospital, but that was split up into two 45 minute sessions before and after lunch. We have asked to keep our appointments in the afternoon with the winter coming up. Thankfully, Beth lives in Ann Arbor, so we might invade her if the weather gets bad!
Trying to get the needed supplies is also a daunting task, but so far so good. You really don't realize how easy it was in the hospital, until you leave.
We have great therapists, and as before, they seem to have taken a special interest in Steve. We are seeing more spontaneous use of the left hand and arm. In PT we are seeing that a walking machine that Steve could not use before, works well now that he has some strength in the left arm. The task is to get Steve to keep his feet from crossing in front of each other. This usually happens when he gets tired.
We plan to start short therapy sessions at home so we can keep Steve "in shape" so to speak. Getting more involved in Steve's therapy will be good for us all. If you'd like to help out with this, please let us know. :) It can be as simple, but important, as having him say words to complete sentences.
Our home design is also helping strengthen Steve's legs. Being a Quad Level, we have added railings to both sides of each stairway and Steve has little problem getting up and down with one of us standing with him. This will only get better as he gains more strength on the left side.
Steve seems so rested to us since leaving the hospital. A dark, quiet room works wonders! He gets about 10 hours of sleep every night. We have also started giving him small doses (which will be slowly increased) of a different anti-seizure medicine, which his neurologist wanted him on. It took us days to get up the courage to actually give it to him, but haven't noticed any side effects. We think timing is everything, and make sure he gets it after tube feeds.
We are thankful for everyone who comes by to see Steve at home, as well as the countless others who send energy, prayers, emails, cards, meals, etc. We treasure you all! Beth keeps Steve supplied with Sudoku puzzles and chocolate chip cookies, which just cracks us up, as he never used to eat junk food!
Please continue to keep Steve in your thoughts and prayers. We're also asking for your prayers for a teacher at the high school Beth and Steve attended. He fell while hunting last weekend and suffered an injury to his spine (neck). He was airlifted to UofM Hospital and is in the ICU there. His family reports that he has been able to breathe on his own for up to 36 minutes, and that he now has some feeling in his upper arms. We don't know him, but this hits a little too close to home. We know what miracles you have worked for Steve, so please keep "Kirk" in your thoughts.
Have a wonderful weekend, everyone! We're taking Steve for his first "official" haircut in a long time, and hoping to enjoy the beautiful weather and maybe see a movie. :)
Thanks,
Rob and Linda
Friday, October 31, 2008
Tuesday, October 21, 2008
update #96 from Linda
Hello! We hope all is well with all of you!
Things are good. Rob and Steve head to Ann Arbor every weekday afternoon for therapy and say they're enjoying the ride and are impressed with the therapists. Before Steve left the hospital they botoxed his left arm, and we have noticed good things with that since arriving home. For example, when he washes his hands, he can lift his hand from his side to the height of the sink, rub his hands together a little bit, and is starting to reach his left in the direction of the towel to dry it.
Steve and I shopped the other day for a recliner for him, since the one in our family room was pretty uncomfortable. We chose one that didn't look too huge in the store, but almost gave Rob a heart attack trying to get it down the stairs. It's gigantic, but has good back and leg support for Steve. We have a little space heater in that corner, so he's pretty cozy. Right now he's sitting there eating ice cream and fighting Rob for control of the remote!
I asked Steve if there was anything he'd like to say about being home, and he wanted to mention that he's enjoying the food! He is still relying on tube feeding with "regular" food in small amounts for pleasure. We put a high-backed desk chair (on wheels) in the kitchen, and he uses that to sit at the table. It works out great, keeps him sitting up nice and straight, and he can use it to scoot around a bit, too. Can't tell you how nice it is to see him sitting at the kitchen table reading the newspaper and having breakfast!
I have taken over Laura's job of nagging him about using his voice, and many days he does a good job. I try to call him on the phone every day so that he has the challenge to talk to me in that way. A friend, and speech therapist for our school district, has offered to come meet with Steve and give us some pointers. :) We are looking forward to that opportunity...thanks, Carol!
This is a new version of "busy" but such a good one. I asked Steve if he missed being in the hospital and I'm sure he would have slugged me if he could! So many people have played a part in getting him to this point...we thank you for that from the bottom of our hearts.
Take care everyone!
Love,
Linda
Things are good. Rob and Steve head to Ann Arbor every weekday afternoon for therapy and say they're enjoying the ride and are impressed with the therapists. Before Steve left the hospital they botoxed his left arm, and we have noticed good things with that since arriving home. For example, when he washes his hands, he can lift his hand from his side to the height of the sink, rub his hands together a little bit, and is starting to reach his left in the direction of the towel to dry it.
Steve and I shopped the other day for a recliner for him, since the one in our family room was pretty uncomfortable. We chose one that didn't look too huge in the store, but almost gave Rob a heart attack trying to get it down the stairs. It's gigantic, but has good back and leg support for Steve. We have a little space heater in that corner, so he's pretty cozy. Right now he's sitting there eating ice cream and fighting Rob for control of the remote!
I asked Steve if there was anything he'd like to say about being home, and he wanted to mention that he's enjoying the food! He is still relying on tube feeding with "regular" food in small amounts for pleasure. We put a high-backed desk chair (on wheels) in the kitchen, and he uses that to sit at the table. It works out great, keeps him sitting up nice and straight, and he can use it to scoot around a bit, too. Can't tell you how nice it is to see him sitting at the kitchen table reading the newspaper and having breakfast!
I have taken over Laura's job of nagging him about using his voice, and many days he does a good job. I try to call him on the phone every day so that he has the challenge to talk to me in that way. A friend, and speech therapist for our school district, has offered to come meet with Steve and give us some pointers. :) We are looking forward to that opportunity...thanks, Carol!
This is a new version of "busy" but such a good one. I asked Steve if he missed being in the hospital and I'm sure he would have slugged me if he could! So many people have played a part in getting him to this point...we thank you for that from the bottom of our hearts.
Take care everyone!
Love,
Linda
Tuesday, October 14, 2008
update #95 from Linda and Rob
Hello! Whew!!
We are home, and getting all settled in. Equipment was delivered, bags of supplies all over the house, prescriptions on the counter...it has taken us a few days to figure out where to put things and how to organize our life.
Right now Steve is napping on the couch. We put his hospital bed in Beth's room, and he is getting caught up on sleep. I sleep in there (on Beth's bed) until I get up for work, then Rob moves in and he and Steve get a couple more hours. We are coordinating tube feeding and water through the night, and getting a schedule in place. Some of the equipment is a little different from that in the hospital, so we're getting used to it slowly but surely! We're also improvising (like using a coat tree to hold gravity bags!) which makes life interesting. :)
It is so good to have him here. That says it all.
Steve's therapy schedule is falling into place. He's going to a facility in Ann Arbor, which was recommended to us by people at the hospital. A long ride, but so far so good! They're trying to schedule everything in the afternoon, which is better for both Rob and Steve.
One "glitch" was that he had a seizure Saturday morning, definitely not as bad as the first, but a seizure none-the-less. Rob and I helped him ride it out, and he is fine. Had a few minutes where his short term memory was not working, but it quickly came back. We stayed calm through everything, and never doubted that he would be OK. As his neurologist told us, seizures are a symptom of brain damage, but do not cause it. She is going to put him on a different anti-seizure med, which is unfortunate, but we trust her judgement.
We're so thankful that Steve has moved to this new chapter. He has a lot of work ahead, but we know he's up to it. Thanks for your continued support, prayers and energy!
Love,
Linda and Rob
We are home, and getting all settled in. Equipment was delivered, bags of supplies all over the house, prescriptions on the counter...it has taken us a few days to figure out where to put things and how to organize our life.
Right now Steve is napping on the couch. We put his hospital bed in Beth's room, and he is getting caught up on sleep. I sleep in there (on Beth's bed) until I get up for work, then Rob moves in and he and Steve get a couple more hours. We are coordinating tube feeding and water through the night, and getting a schedule in place. Some of the equipment is a little different from that in the hospital, so we're getting used to it slowly but surely! We're also improvising (like using a coat tree to hold gravity bags!) which makes life interesting. :)
It is so good to have him here. That says it all.
Steve's therapy schedule is falling into place. He's going to a facility in Ann Arbor, which was recommended to us by people at the hospital. A long ride, but so far so good! They're trying to schedule everything in the afternoon, which is better for both Rob and Steve.
One "glitch" was that he had a seizure Saturday morning, definitely not as bad as the first, but a seizure none-the-less. Rob and I helped him ride it out, and he is fine. Had a few minutes where his short term memory was not working, but it quickly came back. We stayed calm through everything, and never doubted that he would be OK. As his neurologist told us, seizures are a symptom of brain damage, but do not cause it. She is going to put him on a different anti-seizure med, which is unfortunate, but we trust her judgement.
We're so thankful that Steve has moved to this new chapter. He has a lot of work ahead, but we know he's up to it. Thanks for your continued support, prayers and energy!
Love,
Linda and Rob
Tuesday, October 7, 2008
HOME!
After 8 months...Steve comes home this Friday. :) :) :)
We are trying to think of ways to thank the hospital staff and would appreciate your ideas. You can post them here or email me at lindapercha@gmail.com
Thanks so much!
Love,
Linda
We are trying to think of ways to thank the hospital staff and would appreciate your ideas. You can post them here or email me at lindapercha@gmail.com
Thanks so much!
Love,
Linda
Monday, October 6, 2008
update #94 from Linda
Hello! I just got home after spending the weekend with Steve, and wanted to tell you about the good things that have been happening!
First of all, we had a great weekend. Uncle Dave and his family, Aunt Gail and Uncle Don, Rachel, and Uncle Rick and Alyssa (from Georgia) all visited. We celebrated Grams' birthday...thanks, Beth and Ed, for sharing your condo!
Some med changes were made late last week...we were hoping this would result in Steve being more alert. This morning he woke up talking and had the best day ever in Speech, despite the fact that it was at 9 AM, which is normally way too early for him. He was able to do lots of talking and also used the loudest voice we've heard since February! So amazing.
His OT (Patrick) continues to work hard with Steve's left hand/arm. He has been trying to use it more lately to do things like turn a faucet on or pull paper towel out of a dispenser or play cards with Grams. He doesn't have the strength yet, but we're excited to see that he's trying so hard to use it. There's a good chance they'll inject botox tomorrow to try to loosen things up and make it easier for him to move his arm.
PT was so much fun today. I told Tim that Steve was doing some serious talking, so we had him go up to Mike and say, "Get to work, Mike!" Mike has been saying for months that he can't wait for Steve to be able to talk and tell him off. It was quite a moment. :) They had Steve walk the parallel bars with lots of obstacles to step over and he did a great job. The highlight, though, was that they had him walk (with a therapist on each side) unaided. He was unsteady and constantly looked like he was going to fall over, but he walked on his own part of the way around the gym, out into and down the hall, and back into the gym. "Amazing" doesn't begin to describe it.
Steve is having a swallow study this Wednesday. At the present time he relies on tube feeding for nutrition, with small amounts of some regular food just for "pleasure." We would love to reverse this situation...please keep him in your thoughts and prayers!
The medical people meet tomorrow to decide if they want to keep Steve there longer, but as of right now his discharge date is Friday. Equipment is being delivered to our house this week (despite the fact that no home modifications have been started yet!), and we meet on Wednesday with someone to learn about the tube feeding system we'll use at home. Also on Wednesday we're meeting with the people at an outpatient rehab facility in Ann Arbor. It's a long drive, but is under the U of M "umbrella" and the therapists at the hospital know the people there and speak highly of them.
Take care, everyone!
Love,
Linda
First of all, we had a great weekend. Uncle Dave and his family, Aunt Gail and Uncle Don, Rachel, and Uncle Rick and Alyssa (from Georgia) all visited. We celebrated Grams' birthday...thanks, Beth and Ed, for sharing your condo!
Some med changes were made late last week...we were hoping this would result in Steve being more alert. This morning he woke up talking and had the best day ever in Speech, despite the fact that it was at 9 AM, which is normally way too early for him. He was able to do lots of talking and also used the loudest voice we've heard since February! So amazing.
His OT (Patrick) continues to work hard with Steve's left hand/arm. He has been trying to use it more lately to do things like turn a faucet on or pull paper towel out of a dispenser or play cards with Grams. He doesn't have the strength yet, but we're excited to see that he's trying so hard to use it. There's a good chance they'll inject botox tomorrow to try to loosen things up and make it easier for him to move his arm.
PT was so much fun today. I told Tim that Steve was doing some serious talking, so we had him go up to Mike and say, "Get to work, Mike!" Mike has been saying for months that he can't wait for Steve to be able to talk and tell him off. It was quite a moment. :) They had Steve walk the parallel bars with lots of obstacles to step over and he did a great job. The highlight, though, was that they had him walk (with a therapist on each side) unaided. He was unsteady and constantly looked like he was going to fall over, but he walked on his own part of the way around the gym, out into and down the hall, and back into the gym. "Amazing" doesn't begin to describe it.
Steve is having a swallow study this Wednesday. At the present time he relies on tube feeding for nutrition, with small amounts of some regular food just for "pleasure." We would love to reverse this situation...please keep him in your thoughts and prayers!
The medical people meet tomorrow to decide if they want to keep Steve there longer, but as of right now his discharge date is Friday. Equipment is being delivered to our house this week (despite the fact that no home modifications have been started yet!), and we meet on Wednesday with someone to learn about the tube feeding system we'll use at home. Also on Wednesday we're meeting with the people at an outpatient rehab facility in Ann Arbor. It's a long drive, but is under the U of M "umbrella" and the therapists at the hospital know the people there and speak highly of them.
Take care, everyone!
Love,
Linda
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