Hi, and first off, good for you for coming here to find help. You will hear from a lot of moms who know exactly what you are talking about. You need to consider seeking the advice of someone who specializes in vascular anomolies/hemangiomas. There is a condition called hemangiotosis - where it is actually in the blood - and several other issues that could be serious if left untreated. This does not have to be the case, but definately worth ruling out. If you want to chat or if you want me to try and help you, feel free to e-mail me privately at email@example.com
Best of luck with your search for answers and treatment. I hope to hear from you.