I am not sure if you read my private message, hoping I sent it right.
I have a 20 month old son that has an internal hemangioma starting in the airway, extending down around an artery and on the spinal cord. It has been a long road but he is on propranalol. They are going to keep him on it until he is over 2 years old. We tried taking him off at 16 months and we had rebound growth. We are doing another MRI this Wednesday to make sure the meds kicked back in.
Just thought I would share my experience. Let me know if you have any questions.