Update on the "H"

Today we paid our monthly visit to the dermatology folks at UCSF. Long story short, Raya is being put on a steroid wean to be completed by the middle of March; the wean is about twice as fast as it would have been if there were no problems with her growth, so we have to watch carefully to make sure that the hemangioma does not rebound (it probably will, but the question is how much) and that Raya does not develop adrenal insufficiency. The doctor wanted to put Raya on propranolol--a heart drug that only recently has been shown to work very well on hemangiomas--while still weaning from the steroids, but that would have meant 1) 2 days in the hospital for observation when she started the drug to monitor for side effects and 2) Raya eating well so that she does not develop hypoglycemia. Since we are weaning from the steroids precisely because she is not eating well, and the hope is that she will resume more normal eating habits once she is off the steroids, it makes no sense to expect that she will eat well for an early introduction of the propranolol. So, the provisional plan right now is to just do the wean and, based on what happens with the hemangioma, to introduce the propranolol when and if absolutely necessary. The doctors still expect that around 9-12 months they will be able to begin considering laser treatments, since that is the point when most hemangiomas naturally stop growing.
Though he had not done it the last few times, Sava insisted on coming with us today. He had fun looking at all sorts of vehicles on the way there--even though he hates the "noise" of the highway and is becoming ever so anxious about safety on the road--and on the way back put himself to sleep by saying "poop" about 1500 times: "poop in the clouds...poop in your ears...poop in the truck...poop on Golden Gate Bridge...poop."