First I must apologize for the lack of updates over the last two months. It has become very difficult to type more than a few words at a time as both my left hand and neck have weakened further. I am composing this post using my Tobii Eyegaze machine. It is slow going, mostly because my eyeglasses seem to interfere with the tracking cameras. As a result I'm spending more time on Twitter (@davidtanderson) than email/FaceBook/blog -- most bang for the effort. I'm looking into Lasik surgery to rid me of the need for glasses at all. (I wish I would have done so earlier, as lying on a flat table for the procedure may prove difficult.)
My diaphragm has also become weaker so I'm not getting the O2/CO2 exchange my body needs, esp at night. This often results in headaches that can last all day. Using the BiPap at night would help -- but I can't wear it for more than 5 min without feeling like I'm suffocating. I am now working with a Respiratory Therapist who is helping me with a Trilogy machine and different masks. There's quite a difference between sleep apnea and a weak diaphragm and the BiPap and mask provided by the VA are designed for the former. Fortunately Medicare is covering the Trilogy.
Finally on the physical front, my walking is only done in short distances -- and always with the walker.
The weather here has continued to be lovely. We've enjoyed visits from friends and family and have even started to connect with old high school friends. We spend lots of time laughing and enjoying the connections.
We've settled into a good routine, which includes several hours of homeschooling each weekday. We are using Khan Academy and other online resources as well as a number of study books provided by Grace's Aunt Karri. We have a cleaning crew come once a week (courtesy of our awesome, sexy and helpful Hippo/Burningman community in Seattle) as well as weekly visits by Physical and Respiratory Therapists.
We are grateful for all of the sweet emails, cards and care packages, we feel very loved and supported. Spirits are good as we continue to adjust to changes and count our many blessings.
Much more to say but I've been at it for over an hour and want to get this posted.