i am so sorry to hear about your struggles. maybe the propranolol would be worth a try? i know they say it is for growth stages, but it couldn't hurt. my 3mo old daughter has a large segmental hemangioma on her head, as well as a small one on her lip, and a bearded one. we are taking her next weds. to an ENT to do a scope to find out if there is any airway obstruction. did you have to do this with your daughter? our next step after that is MRI. i was just wondering if you did the scope and if so, what your experience was?
~Momma to Logan, 3 and Livy, 1~