Moving Mountains

"You have been assigned this mountain to show others it can be moved." Have you ever read something and felt it was put there just for you? These words clung to my heart as we sat through Josie's 11-hour surgery this past August. They echoed loudly as I watched her suffer through yet another surgical recovery; the sickness, the pain, the heartache. The words followed me through the streets of New York and have since followed me home; reminding me of a greater purpose, insisting that I do more (even when I'm not certain what or how). While I’m waiting to discover my own higher purpose, my prayer for Josie is that she can be a beacon for others who need a glint of hope. While her new muscle grows stronger everyday and we see her smile becoming a reality I can't help but think back to the beginning when I felt hopeless and completely defeated and alone in her diagnosis. All it took was one little seed of hope that our friend Sam planted 6 years ago, that seed is what gave us the courage to move forward. Where would we be without hope?  

First Movement  (Oct. 18; 9 weeks, 1 day after Gracilis Free Flap)

On Sunday, Oct. 15 Josie told us that she felt like her lip was lifting when she was chewing but we were not able to see it. Three short days later we saw a little quiver of a miracle in that cheek! 

Last week we made the trek to Madison, Wisconsin and met Ms Jackie Diels, an Occupational Therapist who specializes in Facial Retraining. Josie and I both learned so much from her! Jackie seemed very impressed by the amount of movement that Josie has already gained without therapy. One of the high-lights for me was learning more about the buckle nerve that was connected during this last surgery. As you may recall, Josie has the transferred nerve from her ankle that is plugged in to her right side and extensioned over to her left side (this is the main nerve that we waited for nearly a year to zing), second is the nerve that came with the grafted muscle (this was connected to her bite nerve and the primary reason why she is seeing movement so soon), and the third is the bonus nerve, the buckle nerve. 

Buckle Muscle is Circled in Black and Arrow Drawn to New Connection

Ms Diels explained to us that connecting to the buckle nerve is not something that is often done. She then went on to say that the buckle muscle has a function that is not greatly missed so Dr. O attempted to give it's nerve a new job by connecting it to the newly grafted muscle. The movements that Josie could possibly gain from this nerve would be more "automatic" (rather than learned) because the nerve originates on her left side and receives its signals from behind the left ear.  Jackie suggested that this may be the reason that Josie is seeing so much untrained movement so early. If this does indeed work Josie will be on the cutting edge and our very own science project. 

Movement Progress (Nov. 15, 13 weeks after Gracilis Free Flap)

As you can see, Josie has made great strides in movement since October! I can't even describe what its been like watching her smile take shape. Just goosebumps, lots of admiration, and so much gratitude!