update #50 from Linda, Rob, and Beth

Tonight the four of us were in Steve's room and he indicated that he wanted to write something. The OT therapist had given us some foam that wraps around a pen, and we bought a gel pen that's easy to write with, so the task for Steve became easier. We also have gotten so good at predicting what he might say that he often doesn't have to write the whole word before we figure it out. For example, he might write a "c" and we guess "can" or "could". Well, tonight we were getting so good at that that he looked at us in total amazement that we were so brilliant. It was hilarious. It was almost as if he was thinking that we were smarter than he ever imagined! As soon as we guessed the correct word he gave us a thumbs up before going on to the next word.

In any case, the notes tonight were "Can you get me a wet washcloth", "Can you please take off my socks", and (our favorite) "Something is irritating my lower back". We were struck by the fact that he wrote in complete sentences and that he was so polite. The issue with his lower back was that a dressing had been put on his tailbone to protect the skin, had fallen off, then put back on incorrectly.

We are so thankful that we are able to communicate with him, and it clearly is a relief to him that he can tell us what's on his mind.

Steve is also aware of the things on his body that are strange to him, like his feeding tube and trach. Yesterday he wrote "I don't need the tube" in reference to the feeding tube, so we explained what it was and how long it would be there. Today he touched his trach and became upset. Again we explained what it did and told him it would be out soon, and that seemed to satisfy him. I'm sure those are challenging things to understand, and we're grateful that he can make sense of them.

Good night!

update #49 from Linda

Hello! Steve has had a restful day...spent some time sitting in a reclining chair, watching golf on TV, getting a foot massage from Beth, etc. He slept well last night and has done lots of well-deserved resting today. The only note he wrote was "take my helmet off" because it was annoying him when he was sitting in the chair. Grams and I couldn't read "helmet" and were guessing other things, so he pointed his finger at his head to help us figure it out! He also seems to be trying to talk more - we're anxious to see if Laura, his speech therapist, agrees. He makes some sounds at appropriate times, and other times just seems to be practicing using his voice. He seems so much more awake during the day, too. Even if he's watching TV with his eyes closed, he often isn't sleeping. We've also noticed that his right eye is opening more. I never thought watching TV could be good therapy, but if he lays in bed and looks up to watch it (the TV hangs from the ceiling), it almost forces his eye open.

A couple friends (Rachel and Shelley) stopped by with a recording of a comedy routine Steve loves (involving koalas and a frozen banana, among other things). If Steve had a voice right now he would have laughed out loud! It was so great to see his reaction. Soooooo if anyone knows of any funny CDs, movies, etc. that Steve likes, will you please let us know? Thanks.

Take care, everyone!

Love,
Linda

Update #48 from Beth

Hi guys,

I just wanted to write a short update to clarify what is going on with Steve right now, because it is very exciting! So apparently, yesterday morning, Steve was started on a medicine called Provigil, which is mainly used to treat narcolepsy. (Actually, the military has also expressed interest in using it to keep soldiers awake for long periods of time.) He got his first dose in the morning, and then around 7 pm, he became extremely active and agitated. He started moving his right arm a lot, and it looked as though he wanted to write something. So I handed him a pen and held up a sheet of paper, and he scribbled a word that looked like "pillow". After another couple of tries, he managed to write "pillow under..." and then when Mom said "feet?" he gave her the "thumbs up" sign.

He slept pretty well last night (Danielle, Mom and I stayed over), and then this morning, he wrote:

"more water" - Steve is usually really thirsty, because the moisturized air they're giving him goes through his trach and not his mouth
"take my socks off"
"they never put the IV in" - in response to a conversation Mom and I were having about his missing IV (actually, they just took it out because he doesn't need one anymore)
"can you give me the remote"
"I don't want to write" - poor guy!

Dad called Dr. Rotello at Suburban to tell him the good news, and Dr. Rotello indicated that the fact that Steve can write indicates a really high level of neurological function, and a good prognosis for the future. So we are all really excited.

Steve is also communicating a lot better now (more consistent "looking up" and "thumbs up" for "yes") and he recognized his occupational therapist, Patrick, when he came in this morning. He is also smiling now: he smiled at the "glapes" joke, as well as the "interrupting starfish" joke (I think that was from his friend Jess), and Uncle Don's mere presence in the room made him crack up...

Anyway, I think that's everything for now. Suffice it to say that Steve is doing great, and it seems like the Provigil really helped. We always knew he was "in there" - he was probably just too tired to show it sometimes!

More soon,

Beth

What tomorrow will bring--Update #47 from Rob

Steve has written another note, "take my socks off",and tried to speak when the OT person he was working with walked in !
Stay tuned! Oh Yeah!!!

Rob

Positive thoughts and prayers--Update # 46 from Rob

I would like to again, thank all of you who read this blog for your positive thoughts and prayers for Steve. As I have said in previous posts, his family has seen them work.

Sometimes they manifest themselves in a hand squeeze, a "thumbs up = yes" sign, foot movement, legs that have rested for 7 weeks now showing movement, hand and arm movement enough to shake hands with those in the room or reach out to touch his girlfriends' arm and then grab her hand as if to never let go, a wave "goodbye" to a friend, Brent R, who was leaving and a wave 'hello" to his Mom and Sister, and, a hand written note saying "pillow under feet".
People, All of these things were accomplished by Steve last night!
We do not know what tomorrow will bring, but I have a feeling things will start to get interesting right about now.
You may wonder how I could leave with all this going on, it was actually very easy, I left Steve in the hands of the three women that love him the most, his Mom, Sister and Girlfriend..........
Besides that, someone had to post the good news!

Rob

Update #45 from - Rob & Beth

It was a bit of a down day today. Beth reports Steve didn't sleep much last night due to some muscle pain so he was pretty tired and less responsive today in rehab.

However, one thing did 'make our day" so to speak.
Steve's uncle Dave came in to visit and the conversation turned to one of Steve's favorite jokes.

It goes like this;
A duck walks into a bar and asks the bartender, "you got any glapes?"
The bartender says," No."
The duck comes in the next day and asks the bartender the same question.
The bartender says " No I do not have any glapes, and if you ask me again, I will nail your beak to the bar."
The duck comes in the next day and asks the bartender, " Do you have any nails?"
The bartender says, "No." He then asks "you got any glapes?"

This little story extracted an "ear to ear smile" from Steve as witnessed by the nurse, Grams and me. It is the first and only smile we have seen since his injury. He obviously understood the joke and reacted to it.

We'll take what we can get!

Thanks to all of you!
Rob

Update #44 from Linda and Grams

Hello! Steve is resting so I thought I'd let you know what went on in OT today. He worked with "Patrick" who used a machine that stimulated the nerves in his arms and hands, with the hope that the nerves would keep firing even after the stimulation stopped. Steve was able to flip his right hand over numerous times, his left hand was more of a struggle (but he could flip it in one direction), make fists, straighten his fingers out (this was harder), and do a bicep curl with his right arm/hand. Patrick told Steve which muscles he was using and had him concentrate on each one as the tasks were done, which we thought was a wonderful technique. He had Steve take a tissue from him and raise it to "wipe" his mouth. Also to close his eyes tightly, then open them quickly. Of course, his right doesn't open much, but it's looking better in recent days. He also had him squeeze a ball with his right hand and do a bicep curl with it...that was quite amazing to watch...he really had to grip hard to hang on to that ball, but he did it!

After all that he managed to go to PT and spend time on the tilt table...they were very happy with what he was doing for them there, also. The people here really cheer him on, and now he's awake enough to hear their cheers.

His friend Mark visited the other day and suggested we bring his Ipod in. Unfortunately I threw it in the washing machine by mistake a couple days before Steve's accident! But Beth was able to access the music on his computer and burn a CD with some of his favorite songs. We brought that in today and he had a look of amazement on his face when the music started. Thanks for that idea, Mark!

We noticed today that he seemed upset when we were talking about getting a cup of coffee, so our thought is that we won't talk about food/drink or eat/drink in his room any more. Also, we talk to him rather than about him, and ask his opinions about things rather than speaking/deciding for him. It's wonderful to see him becoming so alert.

Have a good night, everyone!

Love, Linda and Grams (Mary)