Tuesday, April 29, 2008

Update #58 from Danielle

Hey everybody---



Just thought I'd write a quick little (yeah right) progress note. Steve's been doing great!

I arrived Sunday evening and told Steve I had printed off his facebook page (a social networking website that you can create your own profile). He seemed eager for me to read off all of the nice messages his friends had written. There were so many, that I paused twice to make sure that he wanted me to continue. He did and he definitely cracked up a couple of times when I read off his own funny quotes in that section. =)

He had a fantastic day in physical therapy on yesterday. He continues to lift his head up on his own and is now getting more and more leg strength. They had him lay down on his back and had him bend both knees separately. He did this on again, off again multiple times. The physical therapist looked pleasantly surprised...(and it's hard to impress that guy!)

Rob reported that Speech yesterday was just has impressive. They had him counting out loud. He said that not only was there was no doubt that he made a voice that resembled the number, he was also attempting to move his tongue to make the appropriate sound. Rob also reported that while he was telling Steve that he understands it's hard to relax his left arm and that it's tough, Steve said a very obvious "I know."

In Occupational Therapy they're starting to assess his swallowing functions as well. Hopefully, Steve continues to work at this so that he can soon take liquids from a straw. I bet he can't wait for that day to come. They're also bringing in a Neuro-optomologist to test his eyesight. Although he tells us that he doesn't have trouble seeing the tv and such, he expresses to us that he has trouble seeing the computer screen when close.

Something that cracked me up yesterday was when I was trying to 'entertain' him while the nurse was giving him his meds. I kissed his hand a couple of times and put my nose in-between both of his fingers. I said, "You got my nose!" smiled and winked at him. He then put his thumb in-between his fingers as to indicate that he got it. We both cracked up. =)

Also, Linda just informed me that Steve's new discharge date has been changed to May 28th!!! This is great news!!! Before his tentative discharge was May 5th. We were told that the only way this could be extended is if he were to show noticeable improvement. Boy, did he show them!! Go Steve!!

That's all for now....talk to you soon!



Danielle

Monday, April 28, 2008

update #57 from Linda

Hello, everyone. Just a quick post to let you know that Steve had a wonderful, relaxing weekend. There was a time when I thought we should use his weekends to practice the things he learns in therapy during the week, but have realized he really needs a couple of days to rest...he works so hard Monday through Friday!

On Saturday Beth cut his hair, which was a little tricky, but he feels so much better! We always do things for him like wash his hair and "lotion" his hands and feet...you can tell by the look on his face that these things feel so good. It's also nice to have a quieter room, now that all the air moisturizing equipment is gone. He also LOVES that his trach is gone. The blood pressure meds are gone, and the anti-seizure meds have been (and will continue to be) reduced. Things are good!

The one event that made me laugh was when he was trying to communicate to me that he wanted the remote. I thought he had an itch, and pretty much fixated on that thought. He was writing "r" for remote, and I was sure he was writing "r" for right, so thought he had an itchy right eye, ear, etc. Finally he looked at me in amusement and quickly wrote "cheek" and I thought the problem was solved. But that was just to get me to stop obsessing about the itch thing! He kept gesturing that he wanted to write something else, looked me right in the eyes, and in very large letters wrote "TV". That's when I realized what he wanted, and the look he gave me was pretty funny - like he has no problem communicating, so what was my problem?! We have noticed that he doesn't get nearly as frustrated with his writing as he used to...seems to have figured out that we'll understand eventually, just may take us some time.

I hope everyone is having a nice day. Take care of yourselves!
Linda

Friday, April 25, 2008

Update #56 from Rob

Hello everyone,
Steve had a good day today. It started with PT where they put him on his belly. It would have been OK but they forgot he still has the feeding tube and laying on it did not make Steve happy. Once settled, however, he was able to bend both legs at the knees and bring the shin upwards. His leg strength is gradually improving.

Next was Speech where we found that Steve's' therapist actually contacted Dr. Armonda when she went to DC this week. She somehow met up with him and had him sign Steve's copy of the book "In an Instant". What is interesting is that Steve seems to know who Dr. Armonda is! He also seems to know about the book. I know we talked amongst ourselves while in ICU, about the book and the fact that Steve has the same surgeon as Bob Woodruff, but I do not remember if we ever told him the actual name. Steve must have heard all that was said when we were in his room.
Bob Woodruff is the keynote speaker at U of M's graduation ceremony next week and hopefully will also sign Steve's' book.
She also asked Steve if he could recommend a good vacation spot and he wrote North Muskegon. Using this approach of talking to Steve about subjects he is familiar with really seems to keep him "awake" during the session and is producing better results.

We next went to OT where they worked in conjunction with Rehab Engineering on a computer program that Steve can use to communicate. They let Steve try it out and he was able to spell out his name once he got the hang of it. It is here that we found out that although Steve can see with both eyes, he may not be able to focus on items that are to his left of center. The computer display was altered so that all of the letters appear on his right. Steve has also told me he does not need his glasses to watch the TV which would actually be an improvement in his vision.
Neuro-ophthalmologists are scheduled to examine Steve next week to get a better handle on his vision.
Another thing noticed by Steve's' OT therapist is that he has much better head control without his helmet. She was so surprised that she is planning to do the swallow test earlier than anticipated. This is good news because it would get Steve on the way to removal of the feeding tube and eventually on to normal food.

The last session was PT again and Steve was actually able to do bicep curls with a weight on his right hand.

We also plan to take Nyah, our dog, in to see Steve in the near future. That will be interesting!

Take Care.
Rob

Thursday, April 24, 2008

Update #55 from Linda

Hello, everyone!

At long last, Steve had his trach removed this morning! Rob said he coughed much less than usual during the day, and tonight he seemed to be experimenting with his voice more than ever...said "Beth" for the first time. :) As any man who walks into his room knows, I'm always trying to talk someone into shaving Steve, as it's so traumatic for me (and for him). Tonight he didn't mind at all, so I'm thinking that having the trach out changed some weird sensation he must have been having in his neck. A little thing, but a huge relief!

Tonight I was telling his nurse that (a couple days ago) some doctors were commenting that it was too bad that he couldn't move his legs very well yet, and he promptly raised them up. She said that he must have been thinking "This will shut them up!" and I said that, with his personality, I'm sure that was just what was on his mind. Steve's face immediately lit up with a huge grin...hilarious!

"Doctor Rob" came up with a couple good questions regarding some meds that Steve is on and asked his rehab doctors if he could be taken off them. They spoke with the neuro doctors and it was decided that he'd be weaned off them...they have already started with one. The hope is that he'll have more energy once they're gone. Yeah, Rob!

Another thing that I find interesting is that, no matter how much they put him through and no matter how much it seems to hurt, he will never take pain meds. They offer him tylenol several times each day and he always answers "no". By the next day he seems to have worked through whatever was causing him pain and is ready to move along. Such strength.

All is all, a good day!

Take care!

Linda

Update #55 from Danielle

Hey guys---



Without a doubt, the most exciting thing that happened today was Steve getting his trach out! I was shocked at how simple and easy of a process it was. One of the docs came in around 830 this morning and told Steve to exhale, pulled it out, and covered it with gauze and tape. Vuwalla!! Good as new. ;) It must have felt funny to him at first because he coughed quite a bit, but then by the time rehab started he had hardly coughed at all. The docs mentioned that they'll keep an eye on it everyday and it should heal up on it's own in about 2wks.

Steve is also getting weaned off a couple of his medications. He has his daily meds every morning and night, which all consist of blood pressure medication, blood thinners, heartrate meds, anti-seizure meds, etc., etc....we're starting to wonder because he's doing so much better lately, if these medications are all really necessary. Rob thought they all may contribute to a 'cloudy mind' from time to time and brought this to the attention of a couple doctors. They agreed that they could start weaning him off a couple.

He did a couple things last night and this morning that I hadn't seen him do before. At night he's definitely moving his legs a lot more. It looked as though he were having a lot of 'active' dreams. (He must have been playing soccer last night!) Before, the physical therapists commented that they were only seeing distal movement in Steve, (feet, toes, hands, etc.), but now they are noticing more movement in both legs and shoulders. He was facinated with touching his face earlier this morning too. He'd either point to his mouth, (indicating more water) or would scratch his own neck and ears, (with a little lifting help). He seemed to be feeling around and making new connections. He also wrote the word 'Therapy' this morning. He just was interested to know the schedule for the day. All very cool!

Today in physical rehab they worked a lot with his legs on a sliding board. They had him lay down on his back and slide his legs back and forth....abducting and adducting. He did a great job at this and the physical therapist seemed pleased. They also sat him up in the sitting position with someone supporting his back and placed a mirror in front of him. This was so he could practice with head/neck strength on his own. He still does a great job at turning his head back and forth but before when his head fell forward, someone would always have to push it back for him. Today, his head fell forward but he lifted it all the way up again all by himself! It definitely takes a lot of strength for him to do this...keep in mind he also wears a pretty heavy helmet when he's doing these exercises!

There was a moment this morning, however, that just about broke my heart. A woman came in with a little tiny envelope addressed to Steve, so I decided to open it and read it to him. I looked to see who it was from and told Steve it was from Natalie Clark....both of his eyebrows went up. The letter went on to say how much she was thinking about him and how she was reminded of a little story about him the other day. She said she was walking downtown Ann Arbor one day when she saw Steve sitting outside at Charlies (one of his favorite restaurants/bars) with another friend, Leigh. She stopped by to say hello to both of them. Steve was unaware that the two of them had actually good friends as well. The story went on to say that Steve had mentioned he found it facinating that all the good people he had met at college seemed to stick together and how fortunate he had felt. It wrapped up by reassuring Steve when things seem to get really hard and tough, to remember that all of those same 'good' people are rooting for him and love him very much. I got slightly teary eyed reading it when I looked at him over the card to find tears streaming down his face. He let out a couple loud 'noises' and it truly looked like he was just bawling. :*( I grabbed him, hugged him, and said, "Steve, you're going to get through this! See? So many people are behind you and are here supporting you...everything is going to be just fine!" He seemed to calm down, but goodness, we were both a wreck! It's the first time I've ever seen him react like that...maybe more of his emotions are coming back??

Alright, well that's it for now. Thanks again for all the great advice, thoughts and kind words!!

Steve says 'Hi'....

Danielle

Tuesday, April 22, 2008

Update #54 from Danielle

Hey everybody!

Steve had a long, but successful day in rehab today. When I showed up this afternoon he was just arriving to PT. They told him that they were going to have him stand up today, and both of his eyebrows went up. He seemed anxious to try. What they actually did was put him on a leaning table, strapped him in, and tilted the table forward. It was great to see him put some weight on his knees for the first time. He handled it wonderfully. =)

While he was tilted almost in a complete stand-up position, the physical therapist told him to lift up his right hand to his shoulder 10x. While he was doing this, the therapist got a little distracted talking to another. I was in the background watching and saw that he did 9 'pull ups'. The therapist turned to Steve and asked if he did 10. I wasn't sure if Steve was actually counting in his head, but then he game the thumbs down signal and did one more. It cracked me up. He's definitely not cutting any corners!!

He had an additional type of therapy today called Recreational Therapy. These people adapt to the patients' interests and use stimulants such as card games, board games, etc. Today the session consisted of just asking Steve what he liked to do to get a better idea on how to treat him. They had a whole long list of items and he answered all of them with his true personality in mind. He game a thumbs up to things like sports, music, movies, and gave a thumbs down to sewing, hunting, and gardening. We all know how true that is!

Tonight is the first night that he'll have his trach plugged throughout the whole night. He's been having it plugged for days at a time now, but getting rest at night. We monitor his oxygen level from time to time and he consistently keeps it in adequate range. He has also been making more and more noises. He's definitely learning how to move his tongue around and to use his voice again. Rob mentioned that when Steve was in speech earlier, he clearly said 'Nyah' (his dog) when asked what his pet's name was.

We're figuring out more ways how to communicate with Steve, thanks to the ideas friends and family have shared! Aunt Gail drew him a large picture of man's head and called it the 'Itch Chart'. (I think that's what it's called, correct me if I'm wrong!) Anyways, it's another way that Steve can tell us where he may have an itch if he can't reach for himself. Today, he pointed to the picture and told us his head itches. Thanks Aunt Gail!! Beth has helped tremendously too. She set up a program on his computer with large letters and words at the bottom like, water, mom, dad, irritating, and so forth. He now has a laser mouse and was practicing moving it around to the letters today. Even though he's still getting the hang of it, he's great at clicking the mouse himself!

The thing that gave us all a good laugh today was something he did when Beth and Rob were getting ready to leave. They were saying their goodbyes when I asked if he could wave goodbye to them. He didn't do it at first so Beth thought she'd try to make him smile. She held up the 'Vulcan' signal and waved to him. To those who don't know what this is, it's when you put your index and middle finger together and then your ring and pinkie finger together separately. Right after she did it, he quickly lifted up his forearm and did it back to her. It was hilarious. =)

Alright, that's it for now. Thank you all again for your continuing prayers and positive thoughts!! Steve continues to amaze us everyday! I also want to thank Jen, Uncle Don, and the others who have shared their personal stories and experiences with Steve in the comments. Please feel free to do so and continue to share! We'd all love to hear what you've witnessed Steve do for yourselves.

Hope all is well!!



-Danielle

Saturday, April 19, 2008

update #53 from Grams and Linda

Hello! The most exciting thing that happened with Steve today was when he was visited by a speech therapist, Susan. She visits him on the weekends, but has never gotten much response from him. Today she was impressed! She had him write many things, including his first and last names, the year, the month, the type of building he was in, the name of this hospital, and the city this hospital is in. She also showed him pictures of a house, a comb, and a toothbrush and he wrote the names of those things. Then she asked a series of "yes" and "no" questions, and he responded with a thumbs up or down...and got them all right! They were things like is the door open, are the lights on, did you go to Michigan State, is your degree in biology, etc.

On Friday in speech he was given a written choice of three things that might have happened the previous day, and asked which had really happened - and answered correctly!

It's getting so much easier to understand his writing. You can hand him a pen and he's able to position it in his hand. His actual writing is much clearer, and his hand and arm seem stronger, so he's able to communicate more without tiring out.

Some friends and relatives stopped by today with funny stories to tell, and he laughed (silently) along with the rest of us! It was so nice to see his response.

Our current concern is his left arm, which is challenging for him to straighten out. We work on that often with massage and stretching. Any thoughts, ideas?

Hope you're enjoying the weekend!
Love, Grams (Mary) and Linda