Monday, July 19, 2010

Neurologist, Neurosurgeon, Endocrinologist...Oh MY!

This is a big day for all of us....Neurofibromatosis is going to be met head-on today.
Bailey has been telling me about this sharp - shooting pain, on the right side of her head, behind her ear. I'm not sure if this is one of those things where she knows she has a tumor in that area, and "creates" the pain..or if this is something real. Either way, it will for sure be brought up at todays appointments.
I'm nervous for today....Not for me, but for Bailey, who really has no idea about what faces her. Maybe that's a good thing....maybe not fully understanding this is what is protecting her from freaking out.
Still she remains strong...and that inspires me!
Lastnight, we were talking about our doctors visits and she brought down something she had made for me. She took a long sleeved shirt, stuffed it with fluff, sewed all the openings shut and hugged it as she handed it to me.
"Now you can have something to hug, when I am in the hospital", she said. WOW....what could I say to that? She went on to say that she wanted to make hundreds of these "pillows" to give to children who are in the hospital, so when their parents can't be with them, they can hug it, and not be sad.
What an idea. Her heart is so soft...this girl is amazing!
I told her that we could look into creating some of her pillows, before her surgery, and she got excited! We both hugged her creation and drew out a design for the pillows. My 'Thriving' little girl....I know she won't let NF pull her down....I know what faces her, will only help her grow stronger.
We will do an update after we return from our appopintments today....THANKS SO MUCH FOR THE PRAYERS and WELL WISHES--God Bless!


  1. bless her-that is sweet AND brilliant of her

  2. what a sweetie she is .