As some of you have inquired as to how Bianca is doing (quick update; she was diagnosed with moderate SM at age 7-8 months-I had elected to have her undergo decompression surgery at age 1 year, 2 months-this was the first week in November). It has been over 15 weeks and she is really doing well! Before surgery, she was scratching a few times a day, and progressing to a 'bunny hop' on walks. She never had any yelping.
Post-operatively she is off all medication (including Gabapentin) with only a couple of brief scratching episodes (seconds) per day; she has completely stopped her 'bunny walk' and for all who see her--appears clinically quite normal! Of course there is the possibility of scar tissue coming back but I do think we and our neurologist are pleased so far at the outcome. I hope that this will enable her to live a quality pain-free life for as long as possible.
She is back up to completely full activity and is her usual 'full- of-beans' self! I almost hated posting this after what happened to poor Charlie, but I did want to give positive encouragement that I feel a very positive outcome may be possible if you catch the signs early and intervene. It's a great tribute to Karlin and this board that we were able to recognize the signs of SM and act quickly. I know that no one can predict the future, but we're stopping to smell the roses right now!