Update #108 from Linda

Hello!

Someone asked me today, as happens on many days, how Steve is doing. I always find that an interesting question to answer. The short answer is that he's doing well, progressing slowly but surely. Yes, we would love his progress to be faster, but we try to be thankful for every little thing. For example, sometimes when he eats he seems to "zone out" and not chew - just sit there with food in his mouth. This used to happen pretty constantly, but now very rarely. When it does we have found that it's usually because he has a crumb or some other small thing on his lip...all we have to do is wipe his mouth and the problem is solved. This week we noticed that even this is often not necessary any more, as he is able to lick his lips. Is this "doing well"? It is, even though it sounds so insignificant when I write about it! The same goes for, when brushing his teeth, he is now able to tip his head back a little bit while rinsing his mouth. Also something we've noticed him doing recently. The other night he was sitting on the edge of the bed and was able to take off his shirts without assistance. He can now enjoy a cup of coffee! All good stuff.

A few weeks ago he had appointments with his neurologist (Dr. Selwa) and PM&R doctor (Dr. Eckner). Dr. Selwa commented that she does little for us except write a prescription, but we always feel reassured when we leave her office. Dr. Eckner was quite pleased at the quality of Steve's walking (with his walker) in his stocking feet. I ran out the next day for different shoes - a little tighter and lightweight - we'll see if this helps him. He says they feel better. Rob is also playing with the height of the arm supports on his walker, and hopes to take him walking on the high school track on nice days. Steve also had an eye exam at the place he's gone to for years. It was good to see the people there, and they were wonderful with him. The report is that there's no change in his prescription, although there are some issues. His left eye seems the same, but his right has problems that can't be corrected with a lens adjustment. Their guess is that the fibers that connect the optic nerve to the brain have been traumatized in that eye. Another case of "time will tell." They also mentioned a field of vision test, which we have scheduled for later this month. It will give all of us a better idea of where and what Steve sees clearly, and where the problems are. The doctors at the hospital mentioned this test when he was discharged, but didn't feel he was responsive enough at that time to take it. Now he is, and we hope it will provide some good information.

Grams, Aunt Gail, Steve, and I went to the casino a couple weeks ago. Such fun! Steve played a slot machine with a lobster theme (Carl!), slot machine poker, and slot machine black jack. A good day. We also went to a U of M/Western Michigan baseball game the other day to see our good friend Timmy play for Western. It was a strange feeling to be cheering for the "bad guys" but we survived and it was a lot of fun! At this moment, three of Steve's friends are here watching the Red Wings game with him. Good times.

We continue to go to the gym twice each week. It often takes several hours to use just a few machines, but we try to let Steve set the pace. He also decides on how much weight to use, and how many sets/reps to do. We have noticed good things happening with his left arm (better able to straighten it out) and left hand (better grip) when he uses the machines there. His OT therapist, Julianne, has him wearing a device to straighten out his elbow, as well as a hand brace at night. I still think about the day we were jumping up and down because he moved two fingers. More good stuff!

The main issues with Steve at this time are keeping his head up and multi-tasking. For some reason it is more comfortable for Steve to sit with his head down at about 90 degrees to his body. This is affecting both PT (walking) and OT as well as Speech (coordinating taking a breath with voicing). Julianne has decided to use some medical tape along the back of Steve's neck and down his back to provide some stimulus when his head is not up. Hopefully this will help make holding his head up an automatic response. When Steve's head is properly positioned, the sky is the limit so to speak.(Please see Robs' video).

We now use his feeding tube only for water. Nights are so much quieter now! No more machine sounds and alarms. He is doing a wonderful job eating. I usually feed him dinner, which allows larger bites and faster eating. He is, of course, capable of feeding himself, but life is easier if he spends less time on meals. This has become more important recently, since his therapy days have become longer. Our insurance company is encouraging this in order to maximize our benefits, the therapists want to spend more time with him, and we saw the progress he made while in the hospital with therapy all day long. All good reasons! Mornings are a little tricky, but with help from Grams we're making it work.

He's making good use of his Dynavox machine, and even had a phone "conversation" with Beth the other day! Short and slow, but a nice thing to see. In case you don't have it, his phone number is 248-770-6092. He's not ready to talk/Dynavox yet, but does text if you'd like to communicate with him in that way. He also checks his email a couple times each week. Please know how much he enjoys hearing from you, even if he doesn't respond (I think due to vision issues). His email address is stevepercha@gmail.com.

A couple nights ago I helped Steve into bed and told him I'd be right back with some things we needed. He said, "I'll be right here!" and smiled. I helped him wash his face, but was still laughing about his earlier comment, and said, "What would I do without you to make me laugh?" He said, "What would I do without you to wash my face with ridiculously hot wash cloths?" Always nice to know that his humor is still there! Plus he used a great voice for that conversation, which is always wonderful to hear.

The Great Uncle Dave is planning a golf outing for Steve (please see the post before this one). I have to tell you that I was a little hesitant about this at first. We have been blessed with so much support from so many people in so many ways. I was feeling a little worried and greedy about having another fundraiser. But the reality is that there are many things (equipment, etc.) that could help Steve as he recovers. Also, there's a chance that insurance benefits for his therapy will be limited. The other day I looked at pictures from last year's outing, and remembered the mental boost that day gave to him. I thought about the fact that we had to rent a van to transport him in a wheelchair and that he couldn't eat or drink anything that day. So, thanks to Uncle Dave and everyone else who is working on this event. It will be a wonderful celebration of the progress Steve has made.

I hope life is good for all of you, and that you're enjoying this beautiful weather. Take care of yourselves and each other! Thanks for everything.

Love,
Linda