It's been a rough 24 hours for our little fighter. She so desperately wants to keep up with her sisters and be like everyone else. Her body just doesn't let her. She went into this weekend with a flare up, but so quickly last night it became worse. She hasn't been drinking enough, which puts her output at less than it should be. We are taking it hour by hour, trying every trick our team of doctors have given us to stay at very least one step ahead of this. For now, she is home resting as best as she can. Praying we won't need to go to the hospital.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.