This post is from Pete to answer the first question most people ask, "How's Dewie". The simple answer is, "She's well." Medically, she is stable. Its been a little more than a year since Dewie got her ventilator and up until that time our lives were constantly changing as her ALS progressed. But in the last year things have really settled down and we have gotten used to our new lives.
There are many things for us to be thankful for but I'll mention three that seem important. First she has no pain. Many people with ALS have significant pain but not all. Second, we were lucky to quickly find two very special women who have become excellent caregivers for Dewie. Without them, things would be very different. And finally, Dewie's gift for happiness is the one thing that makes everything else possible. Her positive personality not only helps her continue to enjoy life but it rubs off on the rest of us. She's a joy to take care of.
Our biggest challenge is communication. Since she got her trach last year, Dewie can't talk so we use an "alphabet board" and we've gotten pretty good at it but we still would like to find a way for her to use a computer like Stephen Hawking. Dewie's friend Feather is working on an idea that might just allow that.
Anyway, that's an overview and I'm happy to report the good news. Thanks for reading. Whenever there is an update here, we plan to send out an email saying so. Dewie's greatest joy has always been the people in her life and that's what this blog is all about - allowing her to stay close to you.
-Pete
