Sunday, January 26, 2014

Selective Dorsal Rhizotomy

On April 23, Sylas will be wheeled into a sterile room and will encounter something that could change his life forever. 

He will be undergoing a surgery called a selective dorsal rhizotomy. Feel free to click on the link for more info, but in short, an incision will be made near the base of his spine and the nerves that control his sensory function will be tested. After multiple tests, the nerves that are not working properly will be severed.

It will be intense. We are told an 8-10 hour procedure and 6-8 weeks inpatient therapy.

And it's 4 hours away, in Oakland.

Last October, we went to Oakland for a series of tests and it was determined that Sylas is somewhere between a really good and a great candidate for this surgery. One surgeon told us that he would be surprised if we didn't see dramatic results for our boy. 


So scary.

Really exciting.

We have been talking, thinking, praying about this procedure for more than 2 years, and now it's on the horizon. We can see it. 

I've been making plans and preparations like a woman about to go into labor. 

I'm nesting.

My mom's plane ticket was booked last weekend which makes it feel more real. She has graciously offered to stay with Ivy and August during the surgery and after while Ryan works and I stay in Oakland. She will stay for the first month and I'm still working out the details for subsequent weeks. 

This is really happening. 

And I'm not sure how to feel.

Saturday, January 18, 2014


Dust has gathered. Not just in corners or under beds, but layers and layers of a thick puff that hides words and thoughts and emotions. 

It needs a good dusting.

Unsure of what this space had become, I haven't known how to do this dusting before. Why am I writing? Do I have direction? What is the purpose? 

I think I know now. At least what it will be for a time. 

We are on the cusp of something big for Sylas. It will require so much time, energy and strength from our entire family. I'm anxious and excited wondering how we will do this.

My soul will need a place to spill out it's words. To share with those we love and with those who love us. 

Some time back, my blog designer from 2011 stopped hosting my template pictures. It was old anyway, so now it's black and white. 

No fluff, just words. 

I know that dusting it off might be uncomfortable, with watery eyes and itchy skin.

But if I only try I might discover something I never knew was there.