Her body may be...

...beaten and bruised but her spirit is not. Ash has been the happiest baby today. She is bruised from her right to her left. She is bleeding from her central line site and it is frightening to us, but she is not frightened. She is giggly and playful. She is having some of her best days since becoming sick 6 weeks ago. We have played and laughed all day long. She inspires me to be better, live better, and love life better. I love this little girl!

When she is dressed she looks so good. You can't even tell she is sick. Unfortunately her coags are really out of whack. This is a tough game. She is bleeding from her line site because her blood is so thin and she has very little ability to clot. This is why it would be too dangerous and too frightening to have her at home right now. The smallest injury, self removal of her ostomy, or wound could cause big, big problems for her. As soon as we can figure out what dosing of her medication leaves her in a safe enough place to not clot off the vein, but still not be so thin she could lose too much blood we will be going home. Its going to be a scary 3 to 6 months for us. Dave and I are still adjusting to her bruises and new frailty.

I know its kind of hard to see in this picture(the lightings not the best, but the smile is priceless!) The bruising goes all the way across her chest. I hope I don't offend anyone with this photo, but I am hoping to give you a realistic idea of what is going on with her. This whole blood clot thing has thrown us for a loop. The balance of how much of this med and how much of that one is proving to be difficult. Just another page in her story, but one we are having to learn and understand in order to safely care for her. PT levels, INR levels, coags, clotting factors, etc. are all new areas for us to concentrate on . I'm used to watching her CBC results, her metabolic panels, chemistries, liver enzymes, and prograf levels. Now I am closely monitoring these new areas as well.

More than anything tonight I am thankful that her spirit has returned and her smiles are never ending. Ash is a happy girl and she is loving life. Even life here in the hospital. We are getting so close to home. I can't wait to take her there!