Every morning when Anna wakes up, here first words are typically “Will you play with me?” When I first get home from work, Anna’s first words are “Daddy, will you play with me?” And her last words before bed are usually, “but I wanna play!”
Play is her life right now. I am lucky enough that with Anna, I can be Captain Daddy on a pirate ship, a daddy-turned-into-a-lion-and-then-back-to-her-daddy with her magic wand, a mountain to climb, a tall tower block builder, and a daddy taking her on a walk.
When we do go outside, Anna is LOVING her trike. She is getting better and better! Our usual itenerary is a ride down the sidewalk, visiting with the neighbor’s dog, and playing on the neighbors’ swing-sets.
I thought you might like to see how Anna’s enjoying the springtime play. She’s growing so fast.
Anna Liberty 
I came across your blog totally by accident while watching a clip from Enchanted. When you said “Our little girl can’t go out into the sun” I immediately knew I had to check this out. My aunt and uncle both have XP. (My uncle recently died from a blood clot after surgery to remove melanoma.) I know how rare this disease is and I would love to connect you with my aunt if that would be helpful to you.