Update #66 from Linda

Hello! Just spoke with Rob and he said Steve had a great day in therapy. He did two laps on the "easy" machine that you saw in the video, and two laps on the "hard" machine. I haven't seen it, but apparently he has to support more of his body himself when walking with it. In Danielle's video, you can hear someone telling Steve to hold his head up. He hears that all the time and it's not an easy thing to do. They are looking into getting him a neck brace to help with this, so that his efforts can be more concentrated on moving his legs, etc. Also in PT, they're working on having him move from chair to table, etc. by standing up, moving his feet, and sitting down. I have no doubt that we'll soon be able to use this technique in his room; right now all transfers have to be done with a sling and a lift machine...pretty involved. What ends up happening is that you plan ahead to make as few transfers as possible, and he ends up spending lots of time in one place. When he can handle "pivot" transfers it will be so much easier for him to move around, and make his life nicer.

They've added a new med that helps with "tone" which is part of the issue with his left arm. It was started Tuesday night and yesterday his arm was better, but it seemed like the rest of his body was also more relaxed...not necessarily a good thing! Today was better, though. It's just a situation to keep an eye on and possibly adjust dosages.

His tentative discharge date in Rehab has been extended to June 18th! That's a result of his hard work and the progress he's showing.

Our current big issue is in regards to having his bone flap reattached. There are various opinions about this, and we're meeting with neuro docs on the 30th to decide what's best for Steve.

A swallow test is scheduled for next week. This will be interesting. We are so anxious for Steve to move along in this department, and be able to drink and eat. Last night he was sitting in bed, Beth held a cup of water, Steve held a "sponge on a stick" and he was able to dip it in the water, put it in his mouth, and swallow the water. Did it over and over. My job was to hold his head in the correct position so the water didn't go down "the wrong pipe". No problems at all. But if the OT therapists ask him to swallow, he says he can't "swallow on command"! Please say a little prayer about this. :)

Beth has helped him escape the hospital on two occasions, and he's had a blast. She has none of the parent fears like "what if his wheelchair rolls down the hill?" or "what if he gets too cold and winds up sick?" Both of them just laugh this off, roll their eyes at us, etc. Thanks, Beth! It does wonders for Steve emotionally.

The other thing that does wonders for him is to have his friends visit...remind him of good times and funny events...make plans with him for the future. We know how busy you all are, and how hard it is to see someone in the hospital, but your dedication to him says so much about you. So thanks from us and from Steve.

From all of us...have a nice weekend!

Love,
Linda