I don't know a whole lot about port wine stains (PWS) except for the info that dermatologists give us. Which really isn't much. His face is asymmetric, the side with the birthmark chubbier. This is common we are told. The MRI done when he was one concluded that it is superficial only--not deep into the tissue. Of course what tissue, I don't know, because obviously it is in the skin tissue, or does skin not have tissue? Anyway, there are no lesions on his brain either, which is good because facial PWS are often associated with Sturge-Weber syndrome. I don't know much about that either except that the PWS somehow involves the brain and can causes seizures.
He has a speech delay also. This is not associated with the PWS. Cameron looks like and has so many of the same characteristics as my 12 year-old Brennen, and Brennen was a late talker too. Thank goodness, though, Cameron is more laid back so his speech delay has been much easier to handle! The past six months with speech classes we have been focusing on getting him to use words. To "get" words, as they say. His comprehension score was way high, but expressive speech way low. He can understand but not speak. I still don't understand how he cannot "have" a word which he understands. Anyway, now he speaks sentences and such. We just don't understand much of what he is speaking. Now the focus is on articulation--pronouncing the sounds correctly.
Since we have started articulation, the speech therapist has noticed his tongue is asymmetrical (due to the PWS), which is part of the reason he is having a hard time making the right sounds. Also, he tends to hold his jaw to the right, which makes him look like his jaw is misaligned. But the doctor said his jaw is fine, it's just the muscles. And he doesn't open his mouth very much while talking. Having said all that, we are working on strengthening and making him more aware of those muscles on the left side of his face and tongue--oral motor exercises. We do fun things like drink out of curly straws, lick pudding off our plates, and chew licorice to exercise those muscles.
Because some of the articulation issues are from the PWS, I did a lot of research on the internet lately about PWS. I was so excited to find a website called birthmarks.com. It has other people's stories about their PWS (and other types of birthmarks) and an online support group. I don't know anyone personally with child with a port wine stain so this is great! And as we are planning to do laser surgery beginning when he is four years old, it is nice to be able to read and learn more about it through others' experiences. And also learn about what to expect as he grows older.
What my research made me most aware of however, is that we, or rather Cameron is truly blessed with the birthmark that he has. It is not around the eye, which can cause optical problems, it does not involve the deep tissues which can swell up and cause deformity, and he does not have Sturge-Weber Syndrome. And I also discovered that there are so many children born with other types of facial deformities that I didn't know existed. They have so many more challenges than Cameron will ever face. I know that it takes special spirits to deal with birth defects and these people have a special place in heaven. I have been humbled and grateful for the small challenge given to my son and me, instead of what could have been.