Update and thank you

 First of all, a big thank you to everyone who has contacted us through text and email.  I wish I could respond to each individual one, but just know that the messages are all gratefully received and shared with Kevin.  I know that everyone is wondering how he is doing, particularly if you are used to seeing us at church or support group and we haven't been around.

Our days are very unpredictable.  On some days, Kevin's respiration is relatively "normal," or at least calm, while other days revolve around coughing and suctioning mucus. We have discovered that a medication regimen (even through the night) allows us to keep ahead of the coughing for the most part.  Unfortunately, it also wreaks havoc on Kevin's ability to use his eye-gaze technology, so communication through his Tobii device is definitely hit-or-miss.  Some days he can type whole sentences.  On other days we have to spell out what he needs; I slowly recite the alphabet and watch for him to raise his eyebrows when I get to the right letter.  It's excruciatingly slow.  He's also been sleeping more hours of the day, possibly because coughing and communication are both exhausting.

Anyway, we continue to just take it one day at a time (or sometimes 20 minutes at a time).  Thanks for continued prayers!

Jane