Scarlett's tummy isn't bleeding anymore! And her breathing was much better today. They had her down to 30% oxygen.
Dr. Berger told me today that if her next test comes back negative, then the next step is to send her to Primary Children's to get a muscle biopsy to determine her diagnosis. At this point it seems that any possible diagnosis is not good. It feels like we're asking ourselves, "pick a syndrome. none of them are good, but which would you prefer?" Jon and I talked tonight about just not knowing what her diagnosis is, although we know we need to know to help her. Do we want to know, though, that she may not live long? do we want to know that she may have a crippling disease that gets worse with time? We almost would rather just bring her home and enjoy her without knowing there is a time limit.
I got to hold Scarlett tonight! It had been a few days since I got to.
Jon's parent came up to visit tonight. It was so nice to see them!
We love our Scarlett so much. I think about her constantly when I'm at home and am so thankful when I can hold her in my arms when I go visit her. I am so thankful that lately I've felt more adjusted to our new lifestyle. The drives to the hospital don't seem so long anymore and the time I spend with Scarlett seems to last longer as I cherish every moment.
