Thank you for your patience. Thank you for your compassionate smile as my son loads onto the bus on a lift that takes his wheelchair up. He smiles down at me as we wait for the driver to get on and then roll him in. You see us smiling and it’s contagious. Thank you for… Continue reading Patience Required
When Sebastian was just two he had an ambulatory EEG. He had to have a box with a bunch of wires which were attached to his head, sit on top of his head. Although they put gauze and tape on it, it kept falling off. This was our attempt at keeping it in place. Sebastian is… Continue reading Sebastian, Epilepsy, and the Firefly Garden
At the beginning of July we had Sebastian's check-up at the nutrition clinic where Seb sees many doctors in many departments. The good news was that he didn't lose any weight since his previous visit, 9 months prior. His body fat % is also at a good amount. The bad news was that he's not… Continue reading Blended.
Sebastian is a world traveler. By the time he was 2 he had more stamps in his passport than the average American. Born in London, UK to Australian-British and American parents, I suppose it was inevitable. Despite a new cerebral palsy diagnosis at age 3 months, we moved to Cairo, Egypt for Ali's job. The… Continue reading Around the World with Sebastian: Travelling with a child with CP
One year ago last week Sebastian had his g-tube surgery. Everyone told us we would be so glad we did it. I didn't believe them. But they were right. Day 1 after surgery. Day 1 recovery. The hardest past was not the surgery. Even though any time your child goes under general anesthetic, it's frightening.… Continue reading G-Tube Chronicles: Looking back, one year later
Sebastian doesn't ride the bus to school. We live across the street from our neighbourhood primary school. Every morning when I'm backing out I have to maneuver between the parked cars on both sides of our one way street. Many parents walk their kid(s) to school. But not everyone. We use to school bell across the… Continue reading The BUS
What do I want the world to know about cerebral palsy? CP is an umbrella term for motor disability caused by a brain injury. That injury could be a lack of oxygen to the brain (also caused in various ways), caused by an infection or during fetus development. There are different types of cerebral palsy,… Continue reading World Cp Day