And here is a photo that's quintessential Raya. The girl loves to smile, beaming at anyone who pauses to make eye contact with her. She smiles at me even if she was crying seconds ago in the middle of the night and I just came over to pick her up.
It might not be obvious to an outside observer, but her cheeks have gone down considerably since we started tapering the steroids, and her hemangioma has assumed a deeper color. Since there are no "texture" changes yet--meaning it has not begun to swell--everything is as it should be. If we manage to wean with just changes in color, it would be a real accomplishment. However, chances are pretty good that at some point we will start see significant changes in the appearance of the hemangioma, and the doctors will recommend switching us over to propranolol.
Yesterday we went down to 1 ml from 1.5 ml last week and 2.5 ml originally. Fingers crossed that nothing dramatic happens this week.