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

Wish so much for the cookie cutter life

The more I write the more I feel like I ask and beg the same things. But as a mom of a medically intensive kid it seems like it is all good, or all NOT! At this point, we are not! As most know this flu/cold season had been bad, very bad. Not just the fact that the flu shot didn't work but the amount of BAD bugs has been scary. Put that into my mind,or those in my shoes all over this world. I have a child that a cold is not just a cold. A cough is not just a cough, or even a runny nose. So all those mom's that freak out when they have a booger, I honestly wished I could only see a runny nose as a runny nose. Faith now has been fighting a cold for over a month. It gets better then back with another symptom. Well Saturday the cold turned it's ugly head, and quick. Cough started first, then nose, then by Monday into her lungs. Antibiotics were started after now two nights of not much sleep for either Faith or I. Then today comes, we slept better in between coughs, nap was ok but was just not herself. Then, now, wheezing, the scariest thing for her and this family. Faith didn't have normal lungs and for that matter normal immune system to help what is going on in her little body. So now this day before us that was supposed to be a check up is beginning to look way worse. That I can stomach more almost, not really but almost, but if she gets worse the trip that all of us have been dreaming of and needing so much won't happen. So mundane as I might sound I scream in my soul for prayers for her, on so many levels. For healing most, and that I wont have to disappoint the kids yet again because Faith is sick. To many times do the siblings of a terminally ill child get forgotten and I really hope they don't feel the disappointment soon again. So as a mom I past for rest for me that I can manage what I ahead of me but mostly rest and healing for Faith.