Tests and more tests

There is something about going to that hospital that takes so much from you. Every time I drive up that hill I start to have an anxiety I can't really explain. It must be almost like how Faith feels. Because the whole way up there, every time, she asks where we going and then, even are we going home. It is a reality that days like today are hard to take. I know, we know, what the long term possiblity, and likely is, but I can't think about that. So like last week at dance class seeing her struggle to keep up is when the bitter reality hits. Yes I have an amazing beautiful light of the world little girl, but I also know this girl has a disease that takes more lives than it should. So it is hard, it sucks and I'm hurt and mad at moments. Today we went for another ultrasound to look at not just her kidney, but her spleen and liver too. For quite some time I've noticed the size of her spleen just to touch, but now that her blood counts are dropping they are listening. Her kidney is still swollen by has not changed in the last couple weeks so just monitoring. As for the other part of the hour plus ultrasound all I could get today is her spleen is large and her liver has damage that is due to her disease. Not sure how to sleep on that but I ask again for prayers I can see that beautiful girl in the morning not thinking of the harsh reality. This disease can kill her so we ask for prayers for her. Just not to thrive but to survive. We have been blessed with such a gift in her and want many many more years to take videos and pictures of her smile