Vascular Birthmarks Foundation Forum - View Single Post - Haemangiomas of infancy
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Old 03-10-2008, 11:34 AM
Rachel06 Rachel06 is offline
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Join Date: Jan 2006
Posts: 38

Good for you - I think that if the child is comfortable and the parents are comfortable - then that is half the battle. I actually did the opposite - course we had some vision threatened - and Rachel's were ulcerating and very aggressive. But, we also have a nasal tip h - inside the nostirl on the side too. Sounds like that is what you are saying - is it superficial or compound. Sounds like you are saying compound. Anyway, we are fortunate enough to be able to leave the nasal tip for now. It does appear blue when she is excited or crying - and not nearly as noticable as what we went through - but there is evidence that the cartlidge is destroyed in the nostril area and some in the tip. The side with the h in it droops a tiny bit - only a mother would notice - but... we are looking ahead to when it completely softens - we will need to intervene to keep a "normal" appearance. The nostril will continue to droop and the tip may or may not need intervention - if it begins to "cave". She has already been through so much - we truly loathe the idea of more surgery - but we have been so pleased with her progress, we will determine in a few years. I wish you well wtih your journey. Feel free to e-mail me privately and I am more than happy to share photos with you.
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