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
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From Sunday February 24th - Linda
"Steve has no damage to his arteries, which is great news since surgery in his condition would be dangerous. The plan now is to continue with the same treatment and stay optimistic that his brain will heal.
Yesterday we were watching him display symptoms that indicated he might die. We put it in Steve's hands...stay with us if you can, but we'll understand if you can't. Then, around 7pm, there was a positive sign that repeated itself every hour through the night when they checked his responses. We could hardly convince ourselves to be optimistic, but, as we mentioned earlier, the CT scan showed no further damage....."
Steve - on that day, and every day since, countless numbers of friends, family and strangers have stood in witness of your amazing strength and determination. Most of us will never know what it feels like to look inside ourselves, refuse to accept what others have diagnosed, and overcome all odds when they are stacked their highest. Every day when I read of another wink, nod, gesture, motion; I think back to that February night and relive what has unfolded before each of us. A young mans determination to live, winning out over all that stands in his way. You are truly an inspiration.
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