It was wonderful to see Mom and Dad again. Since school has started back up for Tim and me, it is difficult to get down as often but we are working out the details :) The kids and I got to spend a short visit with Mom and Dad. Dad was very calm and relaxed on Sunday, and was very conversational. He talk/spelled directly to the kids, sharing memories with Diksha about dissecting frogs in Biology when he was in Middle School. He got to see some of the music scores that Joshua has created and was really interested in Joshua's "goings on."
It was as if we weren't in the hospital room with all of those wires. He was definitely "Dad." Short conversations Mom and I would have between ourselves, like, "Where's the button?" or, "What was I looking for?" were immediately answered by Dad. He was helping just like he always has! It was really sweet. Maybe you had to be there, lol - the point is, Dad is really still "here." People often ask, "Is he aware?" to which we often laugh and emphatically answer, "YES!" Some days it truly seems as though there are no wires, or beeps, or hospital sheets. Just us and Dad, hanging out. I love those times. We also watched the WEBN fireworks on TV :)
From Nancy:
It was a good week with steady progress, seen and unseen. Steve sampled more menu items and it is so good to be able to read off real choices. He enjoys turkey with gravy, mashed potatoes (with gravy), most all the desserts, and cranberry juice (thickened). The hamburger without bun...let's just say hamburger needs texture....mustard isn't enough :)
Steve sat up on the side of the bed, so good for core muscles, for a stretch of 7 minutes which is a new personal best. He also has made the wean goal of 16 hours and now has a new one of 24 hours continuous. The step after that is to be on trach collar for short periods which is when he is off the ventilator with just extra oxygen passing through.
He was given another new bed that has a thicker mattress. Unit directors Pat and Brenda are always looking for better. Steve likes this bigger bed and joked to Dr. Krause that he has a "big butt" that sinks down in regular mattresses! (He actually has lost 30 lbs since entering ICU.)
We so enjoyed a visit from Becky, Josh, and Diksha on Sunday. We all watched the Riverfest fireworks on TV in Steve's room. He was so in the conversation (laser enabled) that it was almost like we were at home. Of course, Charlie was there too :). Several funny things, one being when I commented that the closed captions interfered with the fireworks and he quickly said, "Change it on remote!" Another time he spelled, "Cube on my chest." Becky had been feeding him ice chips in the darkened room:)
The Invotek Safe laser System that I rented for Steve arrived Friday! Sandy Banta found the company on the internet. Flora's sister, Kristy Rickert, spent all day Monday with assistant, Becky, beginning the setup, configuring keys to Steve's preferences. I will kick this blog over to Kristy now to tell you about what we think it will do for Steve.
Thank you, Rick, Connie, Sandy and Fred, Lee and Karen, Bob and Sherry, and Lee Llambi, and Dave Myerose, for spending time with Steve this week. It means more to both of us than we can express.
Geek Speak (by Kristy Rickert)
Steve is in the process of getting set up with a product from Invotek, called "Safe-Laser System." It is a keyboard that can be operated with a laser to allow Steve to spell out words and sentences on a small two-line LCD screen at the top of the keyboard. Here is a link to the product page: http://www.invotek.org/products/safe-laser-system/.
Steve is in the process of getting set up with a product from Invotek, called "Safe-Laser System." It is a keyboard that can be operated with a laser to allow Steve to spell out words and sentences on a small two-line LCD screen at the top of the keyboard. Here is a link to the product page: http://www.invotek.org/products/safe-laser-system/.
In addition to its primary function mentioned above, we are hopeful we can also give him the ability to pull up some websites by connecting the Safe-Laser System to his laptop. Basically, the laser keyboard becomes a wireless keyboard for the laptop. However, in the world of point and click graphics, the process may be a little tedious. To fully imagine the hurdles, try to use your desktop computer or device without touching a mouse, mousepad, or touch screen. All screen movement needs to be handled by keyboard commands.
The Safe-Laser System allows for some simple customization and Steve has been able to participate in the decision process as the keyboard is adjusted for his use. We are sure that he will be one of the best consultants for Invotek in the near future!
(Flora here - THANK YOU, Kristy! She spent almost 12 hours at the hospital on Labor Day working to get this system up and running. She continues to work on issues from home, including writing macros.)
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