What a difference two years can make. At age three, Melanie couldn't even say "pink toe," and a typical seizure lasted at least 40 minutes; she was weak and wobbly, a frail and over-drugged waif. Now at age five, she can sit at the lunch table and tell me all about our trip to the zoo; last Friday's seizure lasted two minutes and required no rescue med; she's strong and alert, eats like a champ and wanders around the front yard picking dandelions, counting them in French. Most of her drug doses are half of what they were two years ago, and now we seem to have the hope of cannabis treatment close on the horizon.
I love to see her become more independent, developing new skills and language all the time: learning, growing and understanding more and more. She can play outside in the sun and wind (with polarized sunglasses) without being plagued by absence seizures. She can put on her own shoes and most of her own clothes. She's constantly singing, dancing and galloping around the house.
There has been an increase in some unwanted behaviors and defiance. She beats up her brother a lot, especially with weapons (like play spoons and drum sticks), and I hear lots and lots of whining.
We're working on finding the right school placement for her next year, and I'm looking forward to the daily social time for my little social butterfly. She will benefit from the structured time of learning, growth and play, and James will benefit from the break from the beatings. The kids love each other very much, but poor James just needs a little space.
I thank the Lord daily for her health and safety and development, and I pray she is spared the regressions typical of Dravet, or worse, "The" seizure that always seems to come out of nowhere to steal away skills or even life.
Praise God with me for the gifts and blessings in her life and the joy and blessings she brings to the lives of everyone around her.
