Jaelyn's appointment with the "vascular clinic" on Oct 22nd -
There was no "team of doctors" as was described by the first specialist we saw. Just the main doctor and 1 assistant. He asked a lot of questions, then he took a look at each of her hemangiomas and measured them. I believe I overheard that the one on her neck is 6cm across. He did say that he is not concerned about internal ones because most doctors worry if the child has 5 or more, not 3. So that was a relief. The one on the neck is still a concern because of its location and because of the fact that we have still seen some gradual growth at her age (when it should have stopped).
So the next step is to have her evaluated by an ear nose and throat doctor, to determine if it's pressing on her airway. He wants us to call him on Wednesday because he wanted to ask the radiologist about imaging - what would be the best type, ultrasound, MRI or xray, based on his description of the hemangioma.
He did say that he thinks she will be fine in the long run and that she can get through this without intervention. It's just hard to tell from the outside how deep it is. We did tell him during the questioning that she has been coughing lately for no reason and that she has a raspy snore when she is asleep. Those are possible symptoms that it's slightly pressing her airway, but not necessarily.
Oh and he pressed her abdomen to check her liver and he said it felt normal. That would be the worrisome location of internal ones if she had them, and he didn't feel anything abnormal about it.
So it sounds good so far! Even though it seems like she is in the clear, we are still so happy we are getting her looked at. We both feel better about it, we just wanted to make sure. I'd rather be safe than sorry, especially right now while we have good health insurance.
Tomorrow we are taking her to have an ultrasound done on her neck. After that appt we are taking her to the ENT for an evaluation. I guess as long as the tests come back saying her airway is not being bothered, then we are OK to wait it out for the hemangioma to fade on its own.