Hello! Hope this finds you all well and warm.
Thanks to this beautiful snow, we had no school yesterday or today. Yeah! A chance to organize a few things and get Christmas decorations up. We even got a tree on Sunday before the blizzard hit in full force. We were remembering last year, when we showed up at our usual tree farm to get our tree, and found a sign that said "closed for the season"! Much better this year!
Beth is coming home next week and we can't wait. She's been at Stanford since August, with one quick visit in October to celebrate my mom's birthday. We miss her lots, but are so excited to see where life is taking her!
I was just reading our post from a year ago, and it struck me how things change and how they stay the same. We talked about Steve's speech improving, and it continues to do that. Just very slowly and in certain environments, but better all the time. We play "Taboo" often and are amazed at how well he does with that game, and how something not designed for therapy is such good therapy! He makes attempts at talking on the phone now, which is challenging but good stuff.
A year ago he had a feeding tube and we talked about scheduling a swallow study. Well, as it turned out we've never done the study, but his doctor removed the tube in her office because she saw how ridiculous it was for him to still have it. Healing was tricky for many reasons, and it ended up taking much longer than expected. But it's a thing of the past now, and he has the scars to prove it!
He's doing much of the same therapy that he was a year ago, except that we've been able to add swimming since the tube is gone. I was thinking about all the therapies he does and the kindness that makes it possible for those to happen. I was also thinking about the people who are not officially therapists, but do things with Steve that help him. A teacher once told me that everyone is a teacher, and I am convinced that everyone is also a therapist! Every person at Willowbrook, where Steve goes for therapy twice each week, is a source of support and encouragement for Steve and our family. Jennie plays tennis with Steve every week, which is so good for his hand/eye coordination, strength, and posture, among other things. The owner of SportsClub of West Bloomfield lets us use the facility, so Steve is able to work out twice each week. The Farmington YMCA worked out a plan with us so that we can take him to their therapeutic pool at least once each week. Gail, Rob, and I swim with Steve and make up exercises as we go along. Eric and Theresa come to our house weekly to give Steve a massage and provide such good company for him. Lots of jokes get told during that time! Steve has friends who visit weekly, and include him in many of the things they do. Others text regularly, which is his best way to communicate in a "normal" way. One of Steve's good friends is going to start coming over one night each week to help get Steve on the eliptical and provide him with some laughs, we're sure! A good friend of ours is about to help us build a mat table, which we desperately need for stretching. The people where Steve horseback rides have become such good friends and sources of support to him, from his teacher to the office staff to the volunteers who walk along with him as he rides. All such blessings in our lives, as are every single one of you who reads this and keeps Steve in your thoughts.
We hope you know that you are always welcome in our home. Steve loves the company, as do we. Please feel free to visit, or we can put you to "work" if you'd like that!
We'd like to close this the same way we did a year ago, with a quote from a Christmas card we love:
"It's a time to slow down, let go, help those who need it, love them, too...and maybe that's the way we find our peace and joy. Not by taking on the whole world all at once, but just the part that fits in our hand."
As always, thanks for fitting Steve in your hand. Merry Christmas!
Love,
Linda and Rob
Tuesday, December 14, 2010
Tuesday, November 2, 2010
Update #122 from Rob and Lin
Hello and a belated Happy Halloween to all of you. Hope all is well. Can you tell when this was supposed to be published?
Steve and Rob dressed in costume for the Willowbrook Halloween Feast Friday the 29th and won the "Funniest Costume Award". They dressed as "Occupational/Physical Terrorists" complete with Nerf Weapons and a calling card that has a picture of a medieval "Rack" and a note that said,"O.P.T. Inc. masters at inflicting pain on those who sorely need it!"
As we made up the costumes, we put every quotation we have ever heard from any therapist we have encountered, on our costumes. Some are;
Wait---let me turn up the E-Stim. I've lost count, start over. No Pain no Gain. Does it hurt yet? Are you tired yet? No? do 10 more! P.T.= Pain and Torture, Holy Hamstrings (my personal favorite as they stretched Steve's tight muscles)........... I think we said it all and we got rave reviews from the Willowbrook staff. One thought that has come to mind is that the therapists are a lot like the Nerf Weapons we used. They may look menacing but they never really hurt anyone! They truly are great individuals and we would be lost without them!
Not much to update here; Steve's voice is steadily progressing as is his left arm/hand. He called "Grams" the other day, YES on the phone, and he made the mistake of calling just before the election----Grams hung up on him. She thought he was a solicitor!!!......... Needless to say she was "mortified" and appropriately "chastised" for her error. Steve also carried on an actual conversation with his friend Jess the other night. He is by no means totally conversant, but he has come miles from where he was a year ago, and is definitely moving in the right direction.
Rob and Steve have both started using Slimfast for breakfast in hopes of losing a few pounds as this issue continues to plague Steve. We have moved our elliptical upstairs so Steve can make better use of it, but we all know that you must eat less to lose the most weight.
Katie, Steve's OT, and her student Melissa, have been working tirelessly on stretching and manipulating Steve's left hand and arm. They have gotten him to the point where he is getting some functional use of both the hand and arm. (see video). He can now use the left side to grab hold of the many grab bars we have throughout the house, as well as consistently transfer a tennis ball (slowly) from his left hand to the racket. He can also reach up to shoulder height to grab a tennis ball, and then can almost throw it at Rob.
As we have mentioned, Steve has been off all meds since July and has had no concerns. We are getting a good feel for what his "unmedicated baseline" is and will now be better able to determine if any new meds or procedures are benefiting him. We are currently using caffeine to help Steve's response time and it certainly has not hurt him. We love using "over-the-counter" remedies as opposed to medicating him again. We may have to use something stronger in the future, but for now Starbucks Double-Shots, and Iced Triple Grande Non-Fat No Whip 2 Pump white chocolate mochas are the course!
Steves' friends that he used to room with came in for the Illinois Game and invited Steve and parents along. Rob whined it was too cold, only 40 at game time, but as the sun came out at the half and Michigan managed a win, it turned out to be a REALLY good day. They stopped buy on the following Sunday and readily volunteered to eat a good breakfast. We wonder if these fellows know the good they do when they stop by..........Thanks Guys!
Thanks for keeping Steve in your thoughts and prayers.
Sunday, September 19, 2010
Update 121 from Lin and Rob
Hello to you all, hope life is good for you. Here we go again with a monthly post that has turned into 9 weeks!
Steve has been off Lamictal now since July 24th. He firmly believe his past seizures were medication related and it seems we were correct. We will still keep our thoughts and prayers oriented along that idea and ask that you do the same. Steve is only on vitamins and an anti-acid med that we will discontiue in a few days. We are considering a small dose of a stimulant, but are trying to get him more sleep or possibly just more caffeine before adding any meds.
The YMCA has turned out to be a good theraputic reasource. Having Steve walk and do exercises in the water allows him to stretch muscles to positions he cannot do "on land" so to speak. The fact that Steve can swim now between sessions with the Willowbrook staff at the high school can only help.
We seem to have stopped the weight gain. Now to try and reduce it some. That is a good idea for our whole family, even the dog! At present we are trying to arrange our home into therapeutic areas for Steve's use. We are trying to decide the best place to put our eliptical so Steve can get on (but especially off) safely.
Steve is making most of his gains in the Speech area and believe us it is VERY nice to see/hear! One thing we've been doing with him is playing a game called "Taboo" and getting lots of laughs as we do. The idea is to describe a given word without using any words on a list, and you have to be creative to make that happen. One of our recent favorites was when Steve described a belly button as "an abdominal crater!" Sometimes when you are so centered on what is going on, you miss improvements in other areas though. This is evidenced by some nice happenings regarding Steve's left arm and hand. As when his legs "came back" he is starting to feel cramps and "charly horse" muscle issues. Stretching works these out and when pain free, Steve can actually reach his left arm up to shoulder level. We have him trying to throw a tennis ball with his left hand and he can get the motion but the strength is not there yet. It's also hard for him to open his fingers to release the ball.
Vision issues continue to frustrate him and us, so we saw a highly recommended specialist last week. He confirmed what we have been told regarding left side neglect, but was impressed with the progress Steve has made considering the severity of his injury. He offered lots of information and encouragement, and seemed convinced that Steve will continue to make progress and learn to compensate as time goes on. A very good visit. We'll see him in six months for an updated field of vision study.
Last week we had a meeting with his therapists at Willowbrook (he goes there two afternoons each week) and we're always a little on edge when we attend such things. In the past, at different facilities, they'd blindside us with discouraging comments. That has not happened here. In fact, at this meeting the statement was made that the past two months have been his best since he started there a year ago. That was so good to hear. We see the progress, however small, but it's great to have others be excited about it, too.
Thank you so much to those of you who text Steve. He checks his phone all the time and is so glad to keep in touch with friends. People say that when you read the text messages he sends, you would never know he's been injured. It's the best way for him to stay in touch and great mental therapy for him! Please feel free to text him even if you never have, or even if you think he wouldn't know who you are! He would love it. His number is 248-770-6092.
He also loves visitors, and we hope you know that you are always MORE than welcome to stop by. It's good idea to call us first just to make sure we're here (Rob - 568-6092 or Linda - 568-6091). FYI - when you visit it's easiest for Steve if at least one person sits on his right side. Also, we talk about his improved speech, but you may not witness that. Don't take it personally. He usually does best one-on-one and when it's pretty quiet. We have his Dynavox (talking machine) handy if a number of people are here to help him out if he wants it. He can always also communicate by writing. It's so nice for him to have someone besides us to visit with or eat cookies with or just to watch TV with! If you've never visited him or aren't sure what to expect, please don't let that stop you. We're always here to make sure everything is comfortable.
Thank you for reading this and for continuing to keep Steve in your thoughts. It means so much!
Love,
Rob and Linda
Steve has been off Lamictal now since July 24th. He firmly believe his past seizures were medication related and it seems we were correct. We will still keep our thoughts and prayers oriented along that idea and ask that you do the same. Steve is only on vitamins and an anti-acid med that we will discontiue in a few days. We are considering a small dose of a stimulant, but are trying to get him more sleep or possibly just more caffeine before adding any meds.
The YMCA has turned out to be a good theraputic reasource. Having Steve walk and do exercises in the water allows him to stretch muscles to positions he cannot do "on land" so to speak. The fact that Steve can swim now between sessions with the Willowbrook staff at the high school can only help.
We seem to have stopped the weight gain. Now to try and reduce it some. That is a good idea for our whole family, even the dog! At present we are trying to arrange our home into therapeutic areas for Steve's use. We are trying to decide the best place to put our eliptical so Steve can get on (but especially off) safely.
Steve is making most of his gains in the Speech area and believe us it is VERY nice to see/hear! One thing we've been doing with him is playing a game called "Taboo" and getting lots of laughs as we do. The idea is to describe a given word without using any words on a list, and you have to be creative to make that happen. One of our recent favorites was when Steve described a belly button as "an abdominal crater!" Sometimes when you are so centered on what is going on, you miss improvements in other areas though. This is evidenced by some nice happenings regarding Steve's left arm and hand. As when his legs "came back" he is starting to feel cramps and "charly horse" muscle issues. Stretching works these out and when pain free, Steve can actually reach his left arm up to shoulder level. We have him trying to throw a tennis ball with his left hand and he can get the motion but the strength is not there yet. It's also hard for him to open his fingers to release the ball.
Vision issues continue to frustrate him and us, so we saw a highly recommended specialist last week. He confirmed what we have been told regarding left side neglect, but was impressed with the progress Steve has made considering the severity of his injury. He offered lots of information and encouragement, and seemed convinced that Steve will continue to make progress and learn to compensate as time goes on. A very good visit. We'll see him in six months for an updated field of vision study.
Last week we had a meeting with his therapists at Willowbrook (he goes there two afternoons each week) and we're always a little on edge when we attend such things. In the past, at different facilities, they'd blindside us with discouraging comments. That has not happened here. In fact, at this meeting the statement was made that the past two months have been his best since he started there a year ago. That was so good to hear. We see the progress, however small, but it's great to have others be excited about it, too.
Thank you so much to those of you who text Steve. He checks his phone all the time and is so glad to keep in touch with friends. People say that when you read the text messages he sends, you would never know he's been injured. It's the best way for him to stay in touch and great mental therapy for him! Please feel free to text him even if you never have, or even if you think he wouldn't know who you are! He would love it. His number is 248-770-6092.
He also loves visitors, and we hope you know that you are always MORE than welcome to stop by. It's good idea to call us first just to make sure we're here (Rob - 568-6092 or Linda - 568-6091). FYI - when you visit it's easiest for Steve if at least one person sits on his right side. Also, we talk about his improved speech, but you may not witness that. Don't take it personally. He usually does best one-on-one and when it's pretty quiet. We have his Dynavox (talking machine) handy if a number of people are here to help him out if he wants it. He can always also communicate by writing. It's so nice for him to have someone besides us to visit with or eat cookies with or just to watch TV with! If you've never visited him or aren't sure what to expect, please don't let that stop you. We're always here to make sure everything is comfortable.
Thank you for reading this and for continuing to keep Steve in your thoughts. It means so much!
Love,
Rob and Linda
Sunday, July 25, 2010
UPDATE #120 from Rob
Hello everyone and sincere apologies for the delay!
The June/July period was good for Steve. We noted that in June we logged 18 "good" days and only 2 "bad". The Golf outing was a great success and Steve still seems to be progressing in a positive direction. Voice is getting better and Steve seems to keep his head up more. One little but positive thing we have noticed is more awareness of/control over his feet. He notices when they're not in the proper position (when climbing stairs, walking, getting up from a chair, etc.) and makes those corrections without anyone telling him how to do that. A similar thing happens when he's using the walker and his feet get out from under him; he usually fixes that problem, too. In the recent past he would rely on us to coach him or move his feet for him. We think this is an example of his brain being "re-trained" to command his body, possibly using different connections.
We wanted to make sure that Steve wasn't having to fight off any other issue as well as recover, so we scheduled some tests. We are happy to say that the chest x-rays and bloodwork we had performed in June proved all negative. The only issue now is Steve's continual Vitamin D deficiency and weight gain. As we have been told, Vitamin D plays a big part in how your body processes sugar and if it is used or stored as fat. This may play a part as to why Steve is consistently gaining weight, as well as lack of exercise. Our eliptical arrived this week, so we're hoping that will help, too.
The golf outing was wonderful. Thanks so much to Uncle Dave and all his helpers! On that day we saw old and new friends. We saw people who we see often and people who we haven’t seen in 30 years. We saw friends of Steve’s, friends of our family, friends of our relatives, and friends of friends. We saw people who had traveled long distances to be there. We saw people who took a day out of their very busy lives to be there. We saw names on lists and on signs to remind us that people who were not there were thinking about us. We saw people who have been working tirelessly for months to put this event together. We saw people shaking Steve’s hand and encouraging him. We saw Steve driving a golf cart again, and making his first attempt at public speaking. These are all huge things in our lives, and they strengthen us. Thank you all for that!
Steve has the privilege of working with great therapists throughout his recovery and one that he met at Willowbrook has also continued to communicate with Steve after she left there. Linda and I have often wondered what it takes to be a therapist, and we can now say that among all the attributes, COURAGE is definitely one. This was demonstrated to us at the Golf Outing when Amy actually rode on the back of a golf cart (where the golf bags go), while Steve and Linda sat in the seats and Steve drove !!
July seems to be a better month for Steve as we have already noted 16 good days and zero bad so far. We also have gone one year without any seizures. This has prompted us to ask Steve's neurologist if the anti-seizure med is still needed. An EEG also showed no activity that would indicate seizures. To that end, we have jointly decided to go off of the Lamictal. This will now allow an honest assessment of Steve's condition while not being influenced by any medications. As of this post, the only med Steve is on is a low dose of a prescription anti-acid. We hope that any sedative effect will now be eliminated and that Steve will still progress positively. Your positive thoughts and prayers have made the difference so far; please take a moment and think of Steve during this period.
A few weeks ago we joined the YMCA so that we can use their therapeutic pool. We've been trying to go at least twice each week and have seen some good things happening there. He does lots of exercises while in the water that we have learned from therapists, and many that we make up as we go along! Our favorite is to have him face one of us and run (high-stepping) across the pool while we run backwards in about four feet of water. It's not pretty, but we were surprised at his ability to do this!
Thank you for checking in. We hope you're enjoying the summer and that all is well with you!
Rob and Lin
The June/July period was good for Steve. We noted that in June we logged 18 "good" days and only 2 "bad". The Golf outing was a great success and Steve still seems to be progressing in a positive direction. Voice is getting better and Steve seems to keep his head up more. One little but positive thing we have noticed is more awareness of/control over his feet. He notices when they're not in the proper position (when climbing stairs, walking, getting up from a chair, etc.) and makes those corrections without anyone telling him how to do that. A similar thing happens when he's using the walker and his feet get out from under him; he usually fixes that problem, too. In the recent past he would rely on us to coach him or move his feet for him. We think this is an example of his brain being "re-trained" to command his body, possibly using different connections.
We wanted to make sure that Steve wasn't having to fight off any other issue as well as recover, so we scheduled some tests. We are happy to say that the chest x-rays and bloodwork we had performed in June proved all negative. The only issue now is Steve's continual Vitamin D deficiency and weight gain. As we have been told, Vitamin D plays a big part in how your body processes sugar and if it is used or stored as fat. This may play a part as to why Steve is consistently gaining weight, as well as lack of exercise. Our eliptical arrived this week, so we're hoping that will help, too.
The golf outing was wonderful. Thanks so much to Uncle Dave and all his helpers! On that day we saw old and new friends. We saw people who we see often and people who we haven’t seen in 30 years. We saw friends of Steve’s, friends of our family, friends of our relatives, and friends of friends. We saw people who had traveled long distances to be there. We saw people who took a day out of their very busy lives to be there. We saw names on lists and on signs to remind us that people who were not there were thinking about us. We saw people who have been working tirelessly for months to put this event together. We saw people shaking Steve’s hand and encouraging him. We saw Steve driving a golf cart again, and making his first attempt at public speaking. These are all huge things in our lives, and they strengthen us. Thank you all for that!
Steve has the privilege of working with great therapists throughout his recovery and one that he met at Willowbrook has also continued to communicate with Steve after she left there. Linda and I have often wondered what it takes to be a therapist, and we can now say that among all the attributes, COURAGE is definitely one. This was demonstrated to us at the Golf Outing when Amy actually rode on the back of a golf cart (where the golf bags go), while Steve and Linda sat in the seats and Steve drove !!
July seems to be a better month for Steve as we have already noted 16 good days and zero bad so far. We also have gone one year without any seizures. This has prompted us to ask Steve's neurologist if the anti-seizure med is still needed. An EEG also showed no activity that would indicate seizures. To that end, we have jointly decided to go off of the Lamictal. This will now allow an honest assessment of Steve's condition while not being influenced by any medications. As of this post, the only med Steve is on is a low dose of a prescription anti-acid. We hope that any sedative effect will now be eliminated and that Steve will still progress positively. Your positive thoughts and prayers have made the difference so far; please take a moment and think of Steve during this period.
A few weeks ago we joined the YMCA so that we can use their therapeutic pool. We've been trying to go at least twice each week and have seen some good things happening there. He does lots of exercises while in the water that we have learned from therapists, and many that we make up as we go along! Our favorite is to have him face one of us and run (high-stepping) across the pool while we run backwards in about four feet of water. It's not pretty, but we were surprised at his ability to do this!
Thank you for checking in. We hope you're enjoying the summer and that all is well with you!
Rob and Lin
Sunday, June 6, 2010
Update #119 from Linda
Hello! Thanks for checking in!
I'm busy counting the days until I can stay home this summer and get some things in place for Steve. I have plans to get his old bedroom organized so that we can do some therapy-type things before even coming downstairs to start our day. My hope is to move the recumbent bike up there, and get a table and chair or two. When we win the insurance battle over the mat table, that will go in there as well!
The "Steve things" that we're most excited about right now are his talking and his walking. That's a little ironic, since a year ago we were told by some therapy people that we needed to face the fact that he might never walk any better than he did or talk any better than he did at that time. HAH! We have some videos that we're going to shorten a bit and include with this post. His appearance is a little distorted in the walking one, because of the way it was filmed...he's not quite as wide as he looks! You'll see that Steve's speech is soft and slow. It's not that he doesn't know what he wants to say, it's just that it's so hard to get it out. Not too long ago it could take him 45-60 seconds to respond to questions asked by his speech therapist. Now his response time is so much faster! That's the part that everyone is excited about. As far as walking goes, he has been using a new walker called a Rifton walker and has been very successful with it the last two times he used it. This past Friday he walked 1400 feet in 30 minutes with very little support. That's huge!
Swimming is over for the year (since he swims at a school) so we are looking into alternatives. So far the YMCA looks like the best choice. No hot tub, but a warm therapeutic pool! We tried an underwater treadmill a few weeks ago at another place, but it was a lot of driving and a lot of work for such a short time in the water.
Steve was on his computer last night and did a better job on it than I think he ever has. At one point he looked up and asked me if I had a spare $49,996 since he had found a truck on E-Bay! There is a vision connection to computer use (and other things) that we have just not figured out, but are working on all the time. There are a couple stores that deal with vision aids, and I told him we'd make getting to them a priority once I'm out of school...big thumbs up from Steve!
The other night we pushed the coffee table next to the couch and dragged an old mattress up from the basement and put it on top. Steve could lay on that and stretch out and watch t.v. Such a simple thing, but it works! It also gives us a place to do some stretching for him.
He continues to ride on Saturdays. Loves the horses and the people there, to say nothing of the physical benefits to him. That is a long car ride (over an hour each way) and takes up most of our day, but is so worth it!
Plans are rolling along for the golf outing, thanks to the amazing people who are working on it! Please pray for nice weather on the 26th! If you'd like to play golf and need info, you can email me at lindapercha@gmail.com. If you don't want to play but would like to stop by on that day, please feel free! We always have such a nice time and would love to see you.
We hope life is good for all of you. Thanks so much for continuing to care about and support Steve and the rest of us during this journey. It means more than you can imagine.
Love, Linda
Love, Linda
Sunday, April 18, 2010
Update #118 from Rob and Linda
Hello again, hope all is well with you who read this blog!
Do you know how you know when people care about you and are keeping you in their thoughts and prayers???
You get calls and e-mails saying "hey, when are you going to update the blog???"
You run into friends on the street and after the usual "how are you ?" they say, "by the way
the last update to the blog was over a month ago!!!"
So here we go!
March ended up being a mediocre month for Steve. It seems it was a 1 step forward 2 steps back kind of period. We noted Steve had only 11 out of the 31 days classified as "good days". April has been much better!
Walking is becoming a concern due to his weight gain. We have found Steve is very "out of shape" and can only walk short distances supporting his weight. He does much better with a supportive walker, but tends to push it out ahead of him and hang by his arms. We are still battling with the insurance company over a Mat Table so we can do more stretching and are steadily increasing the weight Steve uses on the leg exercise machines at the gym. We have done some research and tried out some machines, and should have an Elliptical machine very soon, which will get Steve the cardio exercise he needs so badly. We also met with a nutritionist to discuss the journey we have been on regarding his eating. We went from not being able to eat anything, to figuring out what he could safely eat, to (now) controlling what he eats! She had some good ideas and verified that his weight gain is due to lack of movement and metabolism changes due to his injury. In any case, we are all working on this issue! Steve's neurologist does not want him using any artificial sweeteners, so that adds a little wrinkle. If anyone has any ideas to share, we would appreciate them.
What is really noteworthy recently are his gains in speech and left arm/hand use. These gains keep us focused and help us overlook the walking issues. Jennie has had Steve reaching up over his head for tennis balls and Katie (Steves' OT) has been doing some "electro-stimulation" on certain muscles with good success. Steve spontaneously used his left hand to stop a fall (by grabbing a grab bar in our home) just the other day. He can now grasp items and hold them with the left hand while he uses the right to take them apart; for example, changing the batteries in a flashlight. He now takes the first bite of his power bar using the left hand/arm to get it to his mouth! Today at the gym he stated that he could feel his left arm helping to lift the weight on the overhead press for the first time.
The G-Tube area is now a thing of the past and though we pronounced it healed on Feb 28th, in fact March 30th is when we no longer had to cover it with a dressing. To say it is nice not to have to worry about it any longer is an understatement!
April seems to be a better month so far. We have 9 of the 18 days marked as "good". Although Steve came down with what Beth called a "Noro" Virus on the 3rd, It only lasted about 24 hours and he is back to his old self again. Seems the waitress at the restaurant we ate at also had the same issues. We always wondered how Steve's body would handle routine illnesses and are relieved that he appears to react "normally" to what is going around.
At the end of March and early in April, we had Steve use a platform cane when he walks, with support from Rob on one side and one of the therapists on the other. Steve can do about 100 feet before he gets too tired to continue but at least we have a starting point. We are concentrating on Steve supporting his own weight when walking. We had a very encouraging day last Friday when we had Steve put his left arm around the shoulders of his PT and had Rob support his right arm. Steve went 139 feet in this manner as we walked from the PT to the OT area.
As previously noted, Steves' speech is steadily getting better. During one speech session, Stacy had Steve tell her the difference between two things. This makes Steve think up a response and then say it. One such response was an answer to the question "what is the difference between Baseball and Basketball?" Steve answered after thinking for about 20-30 seconds, " in baseball you play with 9 players and play on a field, with basketball you have 5 players and play on a court". This was stated in a clear and concise manner and blew us away. Steve answered 9 other such questions with clarity and good voice volume. Obviously this was a "good" day, but since then we have noticed Steve attempting to voice first. If that fails, we have him try to spell the word out loud instead of writing or air spelling it. Today we called Uncle Don, who has a big birthday tomorrow (actually today, since we're posting after midnight), and Steve was able to wish him an early happy birthday on the phone!
Steve loves to "swim" and we are looking into some options to make this happen more often. The other day we tried out an underwater treadmill at a therapy facility, and are checking out a therapeutic pool at a local YMCA. We are also searching for something he can wear in the water to help him stay upright and feel more secure. We hope to have this part of his therapy in place by the time warm weather arrives!
A huge thank you to Steve's friends, who continue to include him in things they do. Where he goes, we go, so they have to put up with us, too! For example, this weekend we went to a monster truck show and a few weeks ago we went to a Shinedown concert! The emotional boost he gets from such things is priceless. He also loves to text, and checks his phone constantly, so thanks to all who keep in touch with him in that way.
The Great Uncle Dave (along with his wonderful assistants) is planning the third annual golf outing for Steve. It will be on June 26th, and info will be mailed/posted soon. You can't imagine how thankful we are for your support of this event.
Thanks for reading this, and for keeping Steve in your thoughts. We truly treasure your friendship and support, and will try to keep this more up-to-date!
Love,
Rob and Linda
Do you know how you know when people care about you and are keeping you in their thoughts and prayers???
You get calls and e-mails saying "hey, when are you going to update the blog???"
You run into friends on the street and after the usual "how are you ?" they say, "by the way
the last update to the blog was over a month ago!!!"
So here we go!
March ended up being a mediocre month for Steve. It seems it was a 1 step forward 2 steps back kind of period. We noted Steve had only 11 out of the 31 days classified as "good days". April has been much better!
Walking is becoming a concern due to his weight gain. We have found Steve is very "out of shape" and can only walk short distances supporting his weight. He does much better with a supportive walker, but tends to push it out ahead of him and hang by his arms. We are still battling with the insurance company over a Mat Table so we can do more stretching and are steadily increasing the weight Steve uses on the leg exercise machines at the gym. We have done some research and tried out some machines, and should have an Elliptical machine very soon, which will get Steve the cardio exercise he needs so badly. We also met with a nutritionist to discuss the journey we have been on regarding his eating. We went from not being able to eat anything, to figuring out what he could safely eat, to (now) controlling what he eats! She had some good ideas and verified that his weight gain is due to lack of movement and metabolism changes due to his injury. In any case, we are all working on this issue! Steve's neurologist does not want him using any artificial sweeteners, so that adds a little wrinkle. If anyone has any ideas to share, we would appreciate them.
What is really noteworthy recently are his gains in speech and left arm/hand use. These gains keep us focused and help us overlook the walking issues. Jennie has had Steve reaching up over his head for tennis balls and Katie (Steves' OT) has been doing some "electro-stimulation" on certain muscles with good success. Steve spontaneously used his left hand to stop a fall (by grabbing a grab bar in our home) just the other day. He can now grasp items and hold them with the left hand while he uses the right to take them apart; for example, changing the batteries in a flashlight. He now takes the first bite of his power bar using the left hand/arm to get it to his mouth! Today at the gym he stated that he could feel his left arm helping to lift the weight on the overhead press for the first time.
The G-Tube area is now a thing of the past and though we pronounced it healed on Feb 28th, in fact March 30th is when we no longer had to cover it with a dressing. To say it is nice not to have to worry about it any longer is an understatement!
April seems to be a better month so far. We have 9 of the 18 days marked as "good". Although Steve came down with what Beth called a "Noro" Virus on the 3rd, It only lasted about 24 hours and he is back to his old self again. Seems the waitress at the restaurant we ate at also had the same issues. We always wondered how Steve's body would handle routine illnesses and are relieved that he appears to react "normally" to what is going around.
At the end of March and early in April, we had Steve use a platform cane when he walks, with support from Rob on one side and one of the therapists on the other. Steve can do about 100 feet before he gets too tired to continue but at least we have a starting point. We are concentrating on Steve supporting his own weight when walking. We had a very encouraging day last Friday when we had Steve put his left arm around the shoulders of his PT and had Rob support his right arm. Steve went 139 feet in this manner as we walked from the PT to the OT area.
As previously noted, Steves' speech is steadily getting better. During one speech session, Stacy had Steve tell her the difference between two things. This makes Steve think up a response and then say it. One such response was an answer to the question "what is the difference between Baseball and Basketball?" Steve answered after thinking for about 20-30 seconds, " in baseball you play with 9 players and play on a field, with basketball you have 5 players and play on a court". This was stated in a clear and concise manner and blew us away. Steve answered 9 other such questions with clarity and good voice volume. Obviously this was a "good" day, but since then we have noticed Steve attempting to voice first. If that fails, we have him try to spell the word out loud instead of writing or air spelling it. Today we called Uncle Don, who has a big birthday tomorrow (actually today, since we're posting after midnight), and Steve was able to wish him an early happy birthday on the phone!
Steve loves to "swim" and we are looking into some options to make this happen more often. The other day we tried out an underwater treadmill at a therapy facility, and are checking out a therapeutic pool at a local YMCA. We are also searching for something he can wear in the water to help him stay upright and feel more secure. We hope to have this part of his therapy in place by the time warm weather arrives!
A huge thank you to Steve's friends, who continue to include him in things they do. Where he goes, we go, so they have to put up with us, too! For example, this weekend we went to a monster truck show and a few weeks ago we went to a Shinedown concert! The emotional boost he gets from such things is priceless. He also loves to text, and checks his phone constantly, so thanks to all who keep in touch with him in that way.
The Great Uncle Dave (along with his wonderful assistants) is planning the third annual golf outing for Steve. It will be on June 26th, and info will be mailed/posted soon. You can't imagine how thankful we are for your support of this event.
Thanks for reading this, and for keeping Steve in your thoughts. We truly treasure your friendship and support, and will try to keep this more up-to-date!
Love,
Rob and Linda
Friday, February 19, 2010
Update #117 from Linda
Hello! It's been a challenging couple of weeks, but things are back on track again.
First, I managed to bring a "bug" home, and Steve had a cold/sinus thing going on that wiped him out. Add to that the fact that his feeding tube site, which was supposed to heal in 1-2 days is still not healed after over three weeks. Part of that was because of just bad luck, and part was because he was sick (coughing, sneezing, etc.) and putting pressure on that part of his body. In any case, we found ourselves at the gastro doctors' office last Friday and they came up with a plan which seems to be working. We lost a lot of therapy days due to those issues, but have been getting back to our schedule since Wednesday, which is a great feeling!
Steve's talking is really coming along. We teased him when he was sick about the benefits of blowing his nose...coordinating his breaths and working the muscles in his head! He did not appreciate our humor, but I really think it did some good. The other day I was walking with him at home and we had a conversation during that walk about having dessert. He asked if he could have some, what his choices were, and told me what he decided to have...all while walking, which takes lots of concentration. I could understand everything he said, and that was an exciting event because he was "multi-tasking" which isn't always easy for him to do.
People have asked what types of therapy will be open to him now that his tube is out (once the site is healed). I'm sure we'll discover many new opportunities, but here are a few. He'll be able to lay on his stomach for the first time in two years, and do exercises in that position. It will be easier for him to get on his hands and knees, because someone supports his trunk to get him in that position, and always seemed to bump his tube when doing that. There are some machines that support part of your weight when you use them to make walking on them easier, and you're held up by a brace which always hurt his tube site, or risked knocking the tube out. Just FYI, the feeding tube he had wasn't just a little thing that went in his stomach. It was at least 18 inches long and Steve said, besides just the external pain where it entered his body, it hurt inside every time he twisted his body, stood up, etc.
We went to a low vision specialist to see what she could figure out with Steve's vision issues. Nothing is "solved" at this point, but she does know that his eyes don't work together. She gave him some clip-on prism lenses to try for a couple weeks, then re-tested him. He felt that he could see a little better with them. We are now waiting for new glasses to arrive that have prisms built into his lenses, and clip-ons that he will use when reading the newspaper or when on the computer. Those will magnify the print. This should help his eyes "zero in" on things better, and reduce eye strain. A funny story...there was a test the doctor did involving a white square. Steve could only see the white square, even when it should have looked red or striped or pink. She kept trying different things, but all he could see was that white square. Later we were in the waiting room and Rob asked once again if all he could see was the white square. He wrote "I saw one white square AND" (we sat on the edge of our seats waiting for some big revelation) "six or eight fuzzy green monkeys." We have not stopped laughing about that one! (And we have not asked again if he only saw one white square!)
Now it's Sunday the 28th and I'm going to finally finish this post! As of yesterday we are calling Steve's tube site "healed" which is such a blessing. With all the medical people involved in that battle, the person who ended up helping the most was a doctor's assistant. She remembered a similar case and contacted the doctor who had dealt with that situation and found out what treatment had been used. So THANK YOU, Terry!
We're (thankfully) back to our regular therapy schedule. Celia, his PT, has been increasing the weight he uses on the leg press. That will make his legs stronger and help with walking. Sounds like such a simple thing, but we had previously been advised not to do that because of the tone in his legs. So far so good! Rob has also put grab bars all over our house which Steve can use when walking in the hallways. We also hang onto them, since we walk backwards with him, and that can get a little scary near the stairs!
We just passed the second anniversary of Steve's injury. Amazing. To all of you who follow and support this journey, we can't thank you enough.
Take care of yourselves and each other!
Love,
Linda and Rob
P.S. The picture is of Steve riding "Rudy" a few weeks ago at Banbury Cross in Oxford. His assistants are Daniel, Amber, Colin, and Jessica (teacher). Great place and great people! The videos are taken at SportsClub of West Bloomfield where Steve plays tennis and does various drills with our friend Jennie. These show some of the movement he is regaining in his left arm and hand.
First, I managed to bring a "bug" home, and Steve had a cold/sinus thing going on that wiped him out. Add to that the fact that his feeding tube site, which was supposed to heal in 1-2 days is still not healed after over three weeks. Part of that was because of just bad luck, and part was because he was sick (coughing, sneezing, etc.) and putting pressure on that part of his body. In any case, we found ourselves at the gastro doctors' office last Friday and they came up with a plan which seems to be working. We lost a lot of therapy days due to those issues, but have been getting back to our schedule since Wednesday, which is a great feeling!
Steve's talking is really coming along. We teased him when he was sick about the benefits of blowing his nose...coordinating his breaths and working the muscles in his head! He did not appreciate our humor, but I really think it did some good. The other day I was walking with him at home and we had a conversation during that walk about having dessert. He asked if he could have some, what his choices were, and told me what he decided to have...all while walking, which takes lots of concentration. I could understand everything he said, and that was an exciting event because he was "multi-tasking" which isn't always easy for him to do.
People have asked what types of therapy will be open to him now that his tube is out (once the site is healed). I'm sure we'll discover many new opportunities, but here are a few. He'll be able to lay on his stomach for the first time in two years, and do exercises in that position. It will be easier for him to get on his hands and knees, because someone supports his trunk to get him in that position, and always seemed to bump his tube when doing that. There are some machines that support part of your weight when you use them to make walking on them easier, and you're held up by a brace which always hurt his tube site, or risked knocking the tube out. Just FYI, the feeding tube he had wasn't just a little thing that went in his stomach. It was at least 18 inches long and Steve said, besides just the external pain where it entered his body, it hurt inside every time he twisted his body, stood up, etc.
We went to a low vision specialist to see what she could figure out with Steve's vision issues. Nothing is "solved" at this point, but she does know that his eyes don't work together. She gave him some clip-on prism lenses to try for a couple weeks, then re-tested him. He felt that he could see a little better with them. We are now waiting for new glasses to arrive that have prisms built into his lenses, and clip-ons that he will use when reading the newspaper or when on the computer. Those will magnify the print. This should help his eyes "zero in" on things better, and reduce eye strain. A funny story...there was a test the doctor did involving a white square. Steve could only see the white square, even when it should have looked red or striped or pink. She kept trying different things, but all he could see was that white square. Later we were in the waiting room and Rob asked once again if all he could see was the white square. He wrote "I saw one white square AND" (we sat on the edge of our seats waiting for some big revelation) "six or eight fuzzy green monkeys." We have not stopped laughing about that one! (And we have not asked again if he only saw one white square!)
Now it's Sunday the 28th and I'm going to finally finish this post! As of yesterday we are calling Steve's tube site "healed" which is such a blessing. With all the medical people involved in that battle, the person who ended up helping the most was a doctor's assistant. She remembered a similar case and contacted the doctor who had dealt with that situation and found out what treatment had been used. So THANK YOU, Terry!
We're (thankfully) back to our regular therapy schedule. Celia, his PT, has been increasing the weight he uses on the leg press. That will make his legs stronger and help with walking. Sounds like such a simple thing, but we had previously been advised not to do that because of the tone in his legs. So far so good! Rob has also put grab bars all over our house which Steve can use when walking in the hallways. We also hang onto them, since we walk backwards with him, and that can get a little scary near the stairs!
We just passed the second anniversary of Steve's injury. Amazing. To all of you who follow and support this journey, we can't thank you enough.
Take care of yourselves and each other!
Love,
Linda and Rob
P.S. The picture is of Steve riding "Rudy" a few weeks ago at Banbury Cross in Oxford. His assistants are Daniel, Amber, Colin, and Jessica (teacher). Great place and great people! The videos are taken at SportsClub of West Bloomfield where Steve plays tennis and does various drills with our friend Jennie. These show some of the movement he is regaining in his left arm and hand.
Tuesday, January 26, 2010
Update #116 from Linda and Rob
Hi! Just wanted to let everyone know that Steve's doctor removed his feeding tube today! This is huge - a mental boost, reduction in pain, and opens up new therapy options for him. We are so thankful!
Love,
Linda and Rob
Love,
Linda and Rob
Friday, January 15, 2010
Update #115 from Linda
Hello! Beth has Steve on the recumbent bike right now, so I thought I'd give a little update.
Today I had the chance to attend therapy with Steve, and came out of there feeling so good about the way some things are going. He got on the eliptical in PT and was on it for 15 minutes. I gave him a little assistance in keeping his left leg moving as fast as his right, but after about 10 minutes he was able to take over and didn't need any help. His left hand was able to hang onto the bar for the most part; just slipped down now and then and it was a quick adjustment to get him going again. This was the best cardio workout he's had since his injury, and it was obvious that we need an eliptical at home, so that's the next thing on our list! The cardio issue has been driving us a little crazy, and it was great to find a big part of that solution.
In OT we got him on "all fours" on a mat table, and he was able to support himself for long periods of time, including with his left arm. He also sat on the edge of the table, and held his balance very well. Add the "sit/stands" they had him doing in PT and it was a pretty exhausting two hours!
Then on to speech, which just keeps getting better. I remember, in July, Steve taking many minutes to tell his previous therapist that we went to "Ruth Ann's" for ice cream in Muskegon, and we were so excited that he could say those two words so clearly. Now, for example, he'll be given a minute to say as many things in a given category as he can, and he routinely names 7 or 8. Today he was asked to name methods of transportation; his response was "car, boat, plane, walk, run, canoe, para-kite, and pogo stick" so you can see his sense of humor is right there. I think he could have said more, but we were all laughing about the pogo stick and the time ran out!
After such a busy day, including all the usual things that go on at home, he now is spending an hour biking with Beth. We're so proud of his willingness/eagerness to work so hard. It pays off slowly but surely! We're so thankful for Beth's dedication, too. She is a combination saint/slave-driver, and has really turned this into a valuable activity on many levels.
Steve plays tennis with our friend Jennie every week. She has many types of drills that she does with him, and it's amazing to see the progress he's making. Besides tennis, she has him do things like hold a ball in his left hand and move it onto the racquet (which is held in his right hand). Last week she had him do some things like play catch just using a tennis ball. Rob took some videos, and I'm hoping he can attach them at the end of this post. I'm going to go ahead and publish this, but we'll add some videos and/or pictures, so stop back in a couple days to see them!
It seems to us that we have a nice combination of things that have Steve back on track. He has traditional therapies, swimming, biking, tennis, horseback riding, gym workouts, and massage. Very busy days! The other night I looked at a video from about a year ago, and watched it many times. Even in that little video you could see such progress in so many ways.
We have an appointment later this month with a low vision specialist. It's really hard to tell what Steve's vision issues are, and to know if they're the result of his left side neglect or some other injury. He also just had terrible vision before he was hurt. He gets better all the time with things like reading the newspaper, using his computer, and playing games. But there are areas he doesn't seem to see, and his eyes don't always "line up" when he's looking at things. We wonder if these problems cause some his issues with balance and walking, too; we're hoping this doctor can help us figure things out.
Now it's Sunday and I wanted to mention a couple things I noticed at the gym today. There's a machine called an overhead press; Steve pushes his arms straight up (I help the left), controls the weight as it comes back down, then pushes it up again. Today for the first time I noticed his left wrist flexing so that his hand could help control that downward motion. He also does an "ab" machine and I have always positioned his left arm on it. Today he reached it out and his fingers curled to hold it in position. Those were two very little things, but they surprised me. So tonight I asked him to move his left thumb, pointer finger, flex his wrist, turn his hand to face various ways...he could do all those things (very slowly) and I wondered why we hadn't noticed this happening before. Maybe it has, or maybe something else has started working. In any case, it was great to see!
Sometimes I think you'll read the progress we talk about here and think he's back to his old self. That's not the case at all; he has many issues and lots to work on, but we long ago decided to be patient and optimistic! Steve is still texting like crazy, so feel free to keep in touch in that way (248-770-6092). He'd love to hear from you.
Thanks for continuing to read this blog, and for keeping Steve in your thoughts and prayers. I hope life is good for all of you! Take care!
Love,
Linda
Today I had the chance to attend therapy with Steve, and came out of there feeling so good about the way some things are going. He got on the eliptical in PT and was on it for 15 minutes. I gave him a little assistance in keeping his left leg moving as fast as his right, but after about 10 minutes he was able to take over and didn't need any help. His left hand was able to hang onto the bar for the most part; just slipped down now and then and it was a quick adjustment to get him going again. This was the best cardio workout he's had since his injury, and it was obvious that we need an eliptical at home, so that's the next thing on our list! The cardio issue has been driving us a little crazy, and it was great to find a big part of that solution.
In OT we got him on "all fours" on a mat table, and he was able to support himself for long periods of time, including with his left arm. He also sat on the edge of the table, and held his balance very well. Add the "sit/stands" they had him doing in PT and it was a pretty exhausting two hours!
Then on to speech, which just keeps getting better. I remember, in July, Steve taking many minutes to tell his previous therapist that we went to "Ruth Ann's" for ice cream in Muskegon, and we were so excited that he could say those two words so clearly. Now, for example, he'll be given a minute to say as many things in a given category as he can, and he routinely names 7 or 8. Today he was asked to name methods of transportation; his response was "car, boat, plane, walk, run, canoe, para-kite, and pogo stick" so you can see his sense of humor is right there. I think he could have said more, but we were all laughing about the pogo stick and the time ran out!
After such a busy day, including all the usual things that go on at home, he now is spending an hour biking with Beth. We're so proud of his willingness/eagerness to work so hard. It pays off slowly but surely! We're so thankful for Beth's dedication, too. She is a combination saint/slave-driver, and has really turned this into a valuable activity on many levels.
Steve plays tennis with our friend Jennie every week. She has many types of drills that she does with him, and it's amazing to see the progress he's making. Besides tennis, she has him do things like hold a ball in his left hand and move it onto the racquet (which is held in his right hand). Last week she had him do some things like play catch just using a tennis ball. Rob took some videos, and I'm hoping he can attach them at the end of this post. I'm going to go ahead and publish this, but we'll add some videos and/or pictures, so stop back in a couple days to see them!
It seems to us that we have a nice combination of things that have Steve back on track. He has traditional therapies, swimming, biking, tennis, horseback riding, gym workouts, and massage. Very busy days! The other night I looked at a video from about a year ago, and watched it many times. Even in that little video you could see such progress in so many ways.
We have an appointment later this month with a low vision specialist. It's really hard to tell what Steve's vision issues are, and to know if they're the result of his left side neglect or some other injury. He also just had terrible vision before he was hurt. He gets better all the time with things like reading the newspaper, using his computer, and playing games. But there are areas he doesn't seem to see, and his eyes don't always "line up" when he's looking at things. We wonder if these problems cause some his issues with balance and walking, too; we're hoping this doctor can help us figure things out.
Now it's Sunday and I wanted to mention a couple things I noticed at the gym today. There's a machine called an overhead press; Steve pushes his arms straight up (I help the left), controls the weight as it comes back down, then pushes it up again. Today for the first time I noticed his left wrist flexing so that his hand could help control that downward motion. He also does an "ab" machine and I have always positioned his left arm on it. Today he reached it out and his fingers curled to hold it in position. Those were two very little things, but they surprised me. So tonight I asked him to move his left thumb, pointer finger, flex his wrist, turn his hand to face various ways...he could do all those things (very slowly) and I wondered why we hadn't noticed this happening before. Maybe it has, or maybe something else has started working. In any case, it was great to see!
Sometimes I think you'll read the progress we talk about here and think he's back to his old self. That's not the case at all; he has many issues and lots to work on, but we long ago decided to be patient and optimistic! Steve is still texting like crazy, so feel free to keep in touch in that way (248-770-6092). He'd love to hear from you.
Thanks for continuing to read this blog, and for keeping Steve in your thoughts and prayers. I hope life is good for all of you! Take care!
Love,
Linda
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