This is just an update to let people know what has been happening to my baby. She was born with 3 hemangiomas that have become larger and lumpy as she has got older (now only 11 weeks old). She has developed a further 2 small ones since birth. She was born with a tiny red mark on her nose between her nostrils. This has now gotten bigger by about 10 times what it was although it is still small. It had also turned lumpy. She also developed one that grew underneath the skin on the ball of her nose turning it a bluish colour. On 12/08/09 she was admitted to Yorkhill Childrens Hosptial for treatment using Propranolol. After about the 4th dose (which is administered orally) the hemangioma between her nostrild turned a very dark blue/black and we could see that the one under the skin on the ball of her nose had done the same thing. The one between her nostrils then proceeded to turn back to red however it did not appear quite as red as it had done before This change repeated itself another couple of times. It was very odd but the Doctors in the ward said that this was a good sign. We are now at home and give the baby 3 doses a day of Propranolol. About 1 hour after each dose her hemangiomas (particularly the nose ones) turn a very dark blue/black for a while and change from being very hot to touch (when red) to very cold (when blue/black). There is also a difference in the appearance of the hemangioma on her nose. We are sure it looks smaller, less bumpy and less veiny! I hope we are not willing ourselves to see this! We are taking photographs of the changes on the one on her nose as this is the one that concerns us most. We are attending the Hospital again on Wednesday 19th August. All I can say is that 4 days on and things are looking very hopefull.
