Day +199: Today was the first day since last Sunday without any medical treatment for Kiira and it was so nice. We slept in, had a late leisurely breakfast, walked in zero degree weather to a coffee shop, and had a visit from Stacey, Adriana and Adriana’s daughter Jenna, a 2-year old who also has RDEB. We took the top photo when we met last June. The bottom photo was from today. The girls are still checking each other out, but with more hair these days. Jenna said Kiira is her best friend and it filled my heart with joy that Kiira will know other kids like her.
It’s so wonderful to meet other families who have EB. It’s a rare condition and there aren’t any kids near where I live, but because of the EB expertise and trials at the University of Minnesota Children’s Hospital, it’s a place where we can meet and watch our kids grow, swap ideas and support each other through the tribulations EB brings. It feels like a second home to me.
Kiira is doing great. She was so fun today and I loved seeing her be free of IV lines and drugs that make her drowsy and feel lousy. We are still waiting to hear the results of her EBV test, but at least we are having fun while we do.