If you follow us on Facebook you know that something very unexpected came to light. Sophie's MRI which was considered a mere formality at this point, a crossing of the t's and a dotting of the i's so to speak, turned everything on its head.
Turns out Sophie's skull held a (big) secret. It is not the "same but different" brain the doctors were expecting to find, that they are accustomed to finding in the autistic cases. Sophie has a rare brain indeed, structurally different than most.
So far we only have the MRI report to guide us as we are waiting to meet with the geneticist. If any of you ever read an MRI report without a neurology degree you know what we face. The key words in the one and a half page of medical jargon seem to be bilateral perisylvian Polymicrogyria. There are lots of other words pertaining to ventricles and foci and trigones but they are softened with adjectives like "not abnormal", "minimally irregular" and "mild prominence". So other than the elephant in the room everything else appears more or less "ok".
So now what? Everything shifted on its axis just a bit, leaving us groping for answers yet again. Whereas autism as confounding and perplexing as it is, at least has a glossy "awareness campaign" behind it, this condition is vastly unknown. Even the formidable dr. Google was not at his usual over-achieving form. All he could supply were a few obscure medical journals, the above Wikipedia link oh, and the proverbial light at the end of the tunnel.
One blog. One! After sorting and sifting through literally hundreds of autism blogs, this pared-down selection was a drastic reminder that this is unchartered territory indeed. So in my overwhelmed "holy crap!" state I ransacked through the blog, ordered his book (yes, there is a book), emailed the author AND found him on Facebook. I'm sure there's a restraining order being written as we speak. I needed that though. I looked through pictures of his cuter-than-cute daughter (with a certain Sophie-like quality to her, I don't know...) and breathed a sigh of relief. She is ok, we will be ok.
I think for me it is not a drastic halt of our journey, just a detour. We've made our peace with Sophie's disability gradually over the past year. She might remain nonverbal and she is at a risk of developing seizures, but we made some peace with both those possibilities already too. She still has autism-like symptoms, just her brain anatomy provides a clearer picture as to the reason than in most autistic cases. I will continue documenting our journey. I hope that the friends we've made so far will stick with us, even as our paths might slightly diverge. Nothing like marching alone into the unknown.
Here's to our new journey...
|She is still our Soapster. Unique, mysterious and totally awesome|