Hello treasured friends and family!

What is this picture, you ask?? Well, this is our precious warrior heading HOME from Lurie Children’s hospital. Indeed, Christmas came early for the Ake family. Thank you for the unending prayers, notes, meals, texts and calls. It means everything.

Margot’s surgeon, Dr Sandi Lam, after 12 hours of surgery, declared our girl AVM free! While still under surgical anesthesia, Margot was taken to angiogram where it was confirmed that Dr Lam got the beast out! Yesterday Dr Lam showed Billy, Margot and me the scans from the day of Margot’s brain hemorrhage (10/30) and post surgery (12/13). Though our medical understanding of what Margot’s brain has endured is very limited, we have learned enough over the past 7 weeks to know that this story could have had a very different ending. If not for Dr Sandi Lam and her spectacular team, our world might have been altered in unfathomable ways. Seeing the images with our own eyes was a necessary step toward believing this nightmare is over.

So what now? Many have asked what this means for Margot moving forward. Our decision to go the surgical route was driven largely by the fact that surgery gives us every reason to believe she will go on to live a normal, healthy life. That said, she has not escaped entirely unscathed. Margot’s AVM sat partially within the occipital lobe which controls vision. Decreased blood flow to a portion of the occipital lobe has left her with a significant blind spot in her left eye. We will work with occupational therapy to help our girl adjust to this new normal. Margot is old enough to understand all that has transpired and she recognizes there could have been much more devastating deficits. This should have very little impact on her life long term, but right now it is unsettling for her which is understandable.

If we are honest, we did not expect that our neurosurgeon would be the person able to “meet us where we are” emotionally through this journey. Well, shame on us! Dr Lam held our hands the whole way. With her brilliant mind and the heart of a mother (did I mention she has 3 year old twins?) she spoke to us in terms that made sense. She laughed with us and cried with us always with a contagious, calm demeanor. She is an angel here on earth who  graciously shares her gift with children (and families) around the world. 

We don’t know how we will thank the masses of friends and family that have walked this road along with us. We are overcome with gratitude for the gift of family and friends. Thank-you for carrying us through this journey-we could not have done it without you.