I would have a very hard time consenting to treatment that I was not certain would help Julia.
I’m sorry the appointment went the way it did. Surgeons saying ‘why not’ when its not their kid irritate me.

I’ve seen Owen out for walks with caregivers the last couple of weeks, always on the other side of a busy street so I haven’t been able to say hello :(

I would certainly guess it’s been done more in the US – but everything at this point is anecdotal. No studies on children yet. Seems to have more predictable results when the primary diagnosis is dystonia. In Owen’s case, it’s more of a secondary symptom, caused by who-knows-what. He also has malformation/scarring on part of his brain, making the outcome even less certain. Neurologist said it works better for software problems, not hardware :) And Owen’s issues are both.

NYC was great! Didn’t even consider bringing Owen – good break for me and besides, would have been impossible to get around.

It’s easy for a surgeon to say: “I can’t see a reason not to try.”

It seems you’ve listed lots of reasons in all the “maybes” about any potential benefits and possible harms and the fact that they won’t remove it if it doesn’t work.

Has the surgery been used more often in children in the US?

I heard about your trip to New York and loved seeing the pics of Angus.

Thanks, but no thanks.”

I sooo get that…I sooo get your answer. I’m sorry things weren’t more definitive. Damn.