Update on the "H"

Monthly trip to our friends at the UCSF dermatology department today. Dr. Frieden reiterated that the hemangioma looks "great," and said that in the "pre-propranolol age" (aka 2 years ago), it would be looking a lot worse. Raya is down to a small dose of the steroid but her lip still looks precarious so we are taking it more slowly than we intended to; better to take a week or two longer than to ulcerate again--it's been a long road anyway, and another setback would be unfortunate. Dr. Frieden didn't think that the white/purple patches on both sides of the lip presage ulceration, but she warned us to be on the lookout anyway; it's not too late ulcerate again. She said that after we've been off the steroids for a couple of months, and if there are signs of involution, she would consider doing a couple of laser treatments in the office.
Raya has resumed growing in height but she has not made up for the whole 2 inches she did not gain between 2-4 months, so she is pretty much off the charts, the length of a 4-5 month old, rather than a 7-month old. We are told that eventually she will make up for it, but it does not look like that will happen overnight. She is tiny but oh so sweet. The nurse today put her on the scale to weigh her and asked us to leave her there while she took her blood pressure. We exchanged glances, as in, right, and she is just going to stay there calmly, squeezed on that tiny scale, while you do your thing, but lo and behold, Raya endured a good ten minutes in the scale as the nurse vainly tried to take her blood pressure and...without a peep from our girl. Not to be unfair to Sava, but by this point in a similar situation he would have been livid from crying and annoyance. Raya just chilled and checked out the nurse with her penetrating eyes. Such a strong and thoughtful girl.