Hi, everyone,
We are at the two year mark of Steve's GBS journey. There are so many mixed feelings at this juncture- including thankfulness as God returns us from the fluctuation of low points, frustration and even anger. Most of the improvements lately are improvements in strength and stamina. We know that Steve’s nerves continue to regenerate, but right now it isn't translating into much movement that we can see on the outside. Sometimes I stare at his hands so long, I imagine them moving (was that a new muscle twitch??)
Sometimes I find it helpful to turn to the journal I kept and still keep that is part medical history and part my feelings. Thought I'd share an example of this journal that I use as my "wide angle lens" that helps me. Two years ago we were in a fog of crisis in the ICU, just trying to keep Steve alive. The following is from my journal from one year ago:.
March 4: A day I have longed for! Pulmonologist said Steve should try for 18 hours off the vent, adding "you have beat the odds; you are a fighter!" Commented on my strength and endurance also. PT agreed to hoyer lift Steve into a wheelchair and I pushed him down the halls. March 6:: Steve was released for the next level of diet...soft foods. Praise you for his continued healing! March 16: Steve off the vent completely and just needing oxygen. March 19: Thank you, God, that Steve can swallow, talk and breathe without the vent!.
These were very "visual pictures" that gave us proof of improvements, and kept our hopes fresh. The improvements now sometimes seem "out of focus." We know they are there, but when we try to "zoom in", we discover the picture becomes a little more blurred. What we WANT and what IS sometimes gets mixed up in the processing of the picture. We are striving to trust God all the while, and we know He is able to do immeasurably more than we could ever ask or imagine.
Meanwhile, we are finding ways to get some “normal life” activities. We bought a manual wheelchair for Steve, as the power one won't fit in the van. I can't get the manual up the ramp, so staff help me and help fasten him in. Thus we were able to take a sunny day ride last Monday, drove to the condo and picked up Charlie. Steve stayed in the car. Then we went to Snappy pizza and picnicked in the car. We are working with a mobility company on what we need to outfit the van so I can get him in and out by myself in his wheelchair.
The power chair gives Steve welcome freedom and more comfort. Charlie watches him with great interest as Steve "paces" back and forth or travels around the courtyard. He is careful to keep his paws out of the way! It is wonderful to see Steve have this new mode of transport, but since he navigates it with his head, it comes with some problems. It is very touchy and he just this last weekend hurt two fingers when it lunged and pinned him between chair and bed. More needs to be done with this. Each improvement comes with a learning curve for Steve and everyone else.
One of the two therapists who work with Steve consistently, moved to another company and yet has made a way to come back 3X a week just to work with Steve after 10 hours at her new job! Emily and Christy are tireless and extraordinary in skill working with Steve. We are so grateful for them! Thank you, Emily, for keeping Steve as a client!
Even though I don't post as often, please keep checking back. In some ways, we need the support now more than before! Maybe you can help us see things that we may have missed or forgotten, and shed some welcomed light on the "big picture."
Love,
Nancy and Steve
