My Beautiful Broken Brain

IMG_8206My Beautiful Broken Brain is a documentary, much of which was shot on an iPhone, about a young woman who experiences an ischemic stroke. The film describes both who she was before stroke, as told by friends and family, and who she is since.  Like so many things, My Beautiful Broken Brain is some small glimpse into the experience of my son, who also had a stroke and who lives with a brain difference, including cortical visual impairment (CVI). Continue reading “My Beautiful Broken Brain”

Children with CVI and seizures

Too many of our children with cortical visual impairment (CVI) are also dealing with seizures. When CVI is associated with such conditions* as perinatal hypoxic-ischemic encephalopathy (HIE), perinatal stroke, infections of the central nervous system, or traumatic brain injury, so too there is often a history or risk of seizure. Like CVI, seizures look different from one child to the next. Some children experience seizures at birth, or have infrequent seizures, while others suffer from seizures that are nearly continuous and impossible to control. As the parent of a child who experienced stroke, I have done enough research and asked enough questions to know that the risk does not go away. Again, like CVI, it does not resolve (Roman). Continue reading “Children with CVI and seizures”