Friday morning we returned to the Kenepuru Hospital in Porirua to meet with Josie's pediatric neurologist. We arrived early and once again went right in to meet the doctor, to the dismay of both Sophie & Josie who had just started playing with the excellent collection of toys in the lobby.
The build-up to Josie's last appointment was much more dramatic: it was our first opportunity to meet with the neurologist, the specialist who was managing Josie's case, and we were double-booked with another patient as the doctor was about to go on leave for two months. We were told to arrive early, and hopefully the other patient would cancel so we'd have longer than half an hour to meet with the neurologist.
Happily they did and we were able to spend over two hours meeting with the doctor and five of her staff. She reviewed Josie's case in detail, spent a good amount of time observing and interacting with her, and left both Brandie & I feeling quite a bit better about the quality of care Josie was getting. It was a huge relief.
Friday's visit went just as well, although most of it was just us relaying what we've noticed about Josie's condition since November. Even though we haven't seen a lot of progress, the neurologist thought the fact that things haven't gotten dramatically worse was probably due to the drugs' assistance. She did go so far as to diagnose her condition as MAE or Doose Syndrome (where in the past she was reluctant to put a name on it), and has accelerated the dosage and next medication of anticonvulsants based on our conversation. Unfortunately the next drug takes 3-4 months to take effect, so we're settling in for the long haul here and hoping for the best.
On the bright side we are in a good position to manage it, with the helmet Grandma & Grandpa brought over to give her some more freedom, Sophie starting back at kindy and Brandie being able to stay home with her full-time. Our thanks again go out to all our friends and family near and far who have held us up through all of this: lots of hugs, we love and miss you all!