Quick update...

It's been tricky finding time to sit down and write a good, long, detailed post about what Otis has been up to lately, but I wanted to just check in here to let everyone know the big news. After much thought and prayer, we decided last month that it was the right thing for Otis and for us at this time to cancel the 3rd surgical opinion appointment at Johns Hopkins. I won't go into the details of how we finally came to that decision, but I will say that it was a very personal one for us to make. Once we did finally make the decision to put the option of the big surgery to the side for now, we both felt such relief. After so much moving full speed ahead toward what we thought was finally The Answer for Otis, it felt good to finally admit to ourselves that maybe it wasn't the best thing--not right now anyway--and as long as there are other, less extreme options for Otis to try, we want to pursue those as much as we can. We had somehow gotten it into our minds and our hearts that the clock was ticking, that the big surgery was a now or never thing, but the truth is, that's not something we want to feel rushed into. We owe it to Otis to be as careful and as thoughtful in these types of decisions as we can. 

So in lieu of the Big Surgery, we have decided to move ahead with the vagus nerve stimulator, which will work sort of like a pacemaker for his brain. The VNS offers about the same chance for success as the hemi surgery, but unlike the hemi surgery, is completely reversible if it doesn't end up working for him. I'll save the details of the VNS surgery and how the device works for another post--there is a LOT more to say about it, and a lot of questions to answer, I'm sure.

The procedure will take place at Children's Mercy on March 21. It will take approximately 90 minutes. Otis will be under general anesthesia for the procedure, so they will keep him overnight to monitor him once he wakes up. We'll go back to see Dr. A (O's neurologist) about 2 weeks after the surgery--or when his two little incisions (one just below his left collarbone, where they'll implant the little disk-shaped device, and one on the side of his neck, where they'll coil a wire leading from the device up around his vagus nerve) heal so he can activate the VNS. Dr. A will manage the settings of the VNS in the clinic using a handheld/wand computer. It's actually pretty amazing how it works. We're feeling very very good about having chosen this as a next step--it truly feels like the right thing to do right now.

Thanks again to all of you amazing people in our lives for all of the love and support you have given us as we make our way on this journey. The last year was a very difficult one for all three of us, but it would have been so much harder to get through if not for our amazing village (thank you, Cate!). There is no way that we will ever be able to thank you all as much as we wish we could for the kindnesses you've shown to us in so many different forms, but we'll keep trying. 

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