Hi and thank you for continuing to check in on Steve's journey. As you have seen, there are fewer blog posts as we have entered a phase in the illness where the progress can mostly be seen week by week. We trust that the Lord is working mightily below the surface! Knitting nerves back together, unseen but still as real and as vital to recovery as breathing is to life.
The OT, PT, respiratory and speech therapy are consistently offering new goals for Steve to try, including being weaned from the vent with only pressure support for up to 32 hours and working with him to start sitting up. This past week they gave Steve the opportunity to sit in a sling chair that let him recline at an angle. There was a lot of preparation on their part to get him into the chair. Steve was able to sit in it and look across the room facing the window for 30 minutes without getting dizzy. I always knew he was strong to face fear and push on but never more so than now. I am so proud of the fight he is putting up!
We can't express how much the visits from family and friends help, as well as the many other ways you show your care. The visits from Tim and the two vitamin E's last week (Emma and Evy) was so wonderful and then followed by Becky and Josh and Diksha on Friday. Becky had lots of time bedside, as did Tim. We are so so blessed by how they manage to be here so much and not miss a beat at home and work.
Sally Lowitz, the liaison for the GBS foundation has come by twice. She invited me to join her for lunch with a GBS survivor named Debbie and Debbie's husband. Debbie came down with GBS in April 2013 and has a very similar story to Steve's. She and Brian experienced much of what we have so far. She is recovered and uses a small push walker with a seat for support when she stands or walks. Debbie, Brian and Sally came to Steve's room after lunch. He was sleepy but did get to "talk" with them a minute. We look forward to Bob and Sue Pinney from Raleigh coming by June 2 to see Steve. Bob had an equally severe case in 2008 and has recovered. For both Bob and Debbie it was around a year for recovery. Even though GBS visits only about 1-2 people in 100,000 we are finding some who know what it is to walk this path and they and Sally are so available to us and reassuring.
Thank you again to dear friends who take time to visit and step into the unknown with us. We know it is out of the comfort level of some of you but you come! Many of your calls are so timely, as are those of family, that I know they are God-prompted when I feel like I'm scraping bottom.
Lastly, thanks also to the best boss one could have (yes you, Lisa Denham at Kenton County Public Library) and special co- workers that continue to support with thoughtful gifts and donations of sick time. It was so good to be there last week as I wrap up loose ends preparing to retire in a couple of weeks. It has been a great run of 11 years of growth in the best public library in Kentucky!
- Nancy
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