It was a very faint blueish mark on his lip and tongue when he was born. They watched it and told me it would stop growing at a year and go away. It was at 15 months they finallly decided it hadn't stopped growing and we should start treating. We start proprananol and a steriod for the first month. We stopped the steriod and stayed on proprananol. A lump grew under his tongue in the meantime that is connected to everything in his cheek. and it was still growing, so we met with a plastic surgeon. They ordered imaging which is when they discovered it is also into his neck and on a vocal cord. So due to the proximity of the airway they want to try and stop it. They continue to tell me it will go away as he gets older, which is frustrating. From looking around it presents like a kaposiform, which is why I choose boston they seen to see these the most.
I'll keep you guys post and thanks for the replies