Today was our appointment with the specialist at Children's Hospital. Here's the rundown:
I must start by giving kudos to Children's - we arrived a bit early and got checked in (Ok, so how cool is it that they have a greeter at every door - who even opens the door for you?). Their system was orderly and efficient (which you know I love), and we had a very short wait time. We were done and out of there in less than an hour. Which is great, except that when you drive three hours for an appointment, you kind of want it to take a while. But I digress...
We met with the specialist (who I will call Laser Beam Doc or LBD) and her two nurses. They were all very kind and doted on Chickster a bit - because who could resist? LBD basically told us exactly what we expected to hear. While not life-threatening, there is a medical concern with the Port Wine Stain due to the fact that a certain percentage of them grow, change, and generally wreak havoc. And since there is no way to tell if one will do that at any time in the future, they treat them all. There is no cure, only treatment. And it takes time and multiple treatments, including possible annual "maintenance" treatments for the rest of his life. The younger you start, the better. It seems that starting younger provides a higher chance of success. They're not exactly sure why - just that it works better that way.
Also, for a PWS on the face, Chickster's is in the best place it could be in. LBD told us that port wine stains on the side of the face respond better than other locations on the face. So that was good news. However, there is no way to determine how each PWS will respond to treatment. You basically have to just start and see what happens.
The goal is to lighten it to the point that it is not noticeable, which is something they are able to do much of the time when treatment is begun early. And even if it is lightened that much, it will still be visible when he's hot, crying, has a fever, or something like that. So instead of turning green like the Hulk, he'll have a glowing mutton chop! :)
So in just a few months, Chickster will begin his laser beam journey. He will receive a laser treatment approximately every 3 months until he's had between 3 and 5 treatments. At that time, we will evaluate their cumulative effectiveness and determine where to go from there. The treatments have to be done three months apart in order to allow full healing and to really see how effective the previous treatment has been.
And LBD impressed me when she told us she's used the laser on herself, and knows exactly what it feels like (I take issues with doctors who don't know what their treatments/ prescriptions feel like). So she is able to assure us that Chickster will have minimal discomfort. However it will look yucky afterwards. Basically he'll have little purple dots on his face in the lasered area - tiny bruises. They will go away within a couple of weeks, just like a normal bruise does. If that's the only adverse effect, I think we can handle that.
Thanks to everyone for your prayers and concern for our sweet boy. God has certainly provided wonderful news for us already. We are blessed to have access to this world-renowned doctor and more importantly, your prayers and support!
In case I have left something out, I will be happy to answer questions - just post them in the comments section and I'll reply there.