Papa was nice enough to slip into his Christmas pjs to take a picture with Avery in hers when he got there this evening.
Avery’s hemoglobin rose ON ITS OWN this evening! This is really encouraging as far as her gut healing. Another great day!
This silly grin basically represents how our day has been. Her hemoglobin has continued to hold steady and she had a great day!
What we do NOT have from Boston at this point is any kind of acceptance into their programs. And they may not have a reason to take her now.
It started as a raised rash on her forehead and we’ve been putting a steroid cream on it. So what is it? GVHD. Because, of course it is.
You could never tell by the look of her that she’s “sick.” Avery’s been up playing, dancing, and smiling. She had an overall great day!
More importantly, we were given a diagnosis: Watermelon stomach is a condition in which the lining of the stomach bleeds.
We need everyone on the same page so we can get Avery well. So, yes, we’re considering moving her if we can find another hospital.
We had to start a new medicine this afternoon to try to stop the bleeding in her stomach. We almost ended up in ICU around 3:30am.