Update on Bianca
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!
Barkleigh Bianca’s mom and dad
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and 
The key thing for you is that you were able to act early when you could think through options and what was right for you. 
It is really lovely to get an update and hear that she is doing so well. She really is doing very well to be off gabapentin etc; that's fantastic!
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