Peyton has been really up and down the past few days. Well, not even days, it seems like she is up and down hour by hour. It is really scary how fast things can change in the SMA world. There is no time to be complacent. If you know SMA, you know that there is no down time. Even when your child is well, you still have to do all the treatments, follow all the protocols, and still worry that they will "plug". ( I will explain that later)
This blog is going to be a bit different. I have not been to visit Peyton yet. I have been getting all the updates via text and Facebook status's...so I thought I would go over the last few days and give a clear picture of how things change so quickly........
"Peys in PICU in madison, mad as hell, which I'm happy for. She crashed today and was transported to waukesha, madison then sent there mobile ICU, CHETA, to transport her to madison. Mom went with her, me and Ky are on our way.
Btw, if you don't know wht CHETA is, look them up, they are absoulty awesome!
American Family Childrens Hospital with Dr. Schroth and her staff is amazing, I feel safe putting Peys life in their hands."
"Finally here, shes on Q2, which means she gets a respitory treatment every 2 hrs which, you can imagine, she gets no sleep, this is wear it takes a toll! We're on isolation, which means we can't leave the room"
"Update, good spirits, talking up a storm, laughing and playing, still really junky tho"
I am blessed to be the Aunt of Peyton. She has changed my life in so many ways. I will fight, to save her life and the lives of so many others with SMA.