On the 2nd day of #RareChristmas Phoebe wants you to know...living rare measn fighting to stay out of the emergency room. With the excitement of Christmas, looking at the lights, waiting for Santa and the joy of playing with her new toys, Phoebe has a difficult time pacing herself. She doesn't want to miss anything and does not take the rest or fluids she needs. There past few years she has needed trips to the ER the day after Christmas for IV fluids and rest. And while we have not had to make a trip to the ER yet today, she is balancing on the edge of possibly needing to go. So it is with the tricks her team of doctors have taught us that she is fighting very hard to stay at home. #12DaysofRareChristmas
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.