Friday, September 14, 2007
Day 2 after her 6th treatment
She's acting more her normal self, although she's walking a little funny (trying to keep her pull-up from rubbing her legs where they've been lasered). Poor baby can't even sit on the toilet, because it hurts the back of her thighs.
Some of the spots on her face are starting to fade out already. I let her play with my camera so I'm gonna post some of the pictures she took. My little budding photographer. :) She has some pretty artistic shots.
A phrase we hear a lot right now is: "I gots a boo-boo." Yeah, baby girl, you gots a boo-boo...
The back of thighs and calves are blistered quite bit, really bumpy. It's understandable that it hurts. I'm not sure if the major blistering is normal for first times or not. But the back of her legs look like ranges of little tiny hills, they're so bumpy.
Oh, and also, we got the results back from her MRI. She's as normal as can be. No brain involvement at all. So I believe she has Type 2 Sturge-Weber Syndrome.
This type involves a facial angioma and the possibility of glaucoma, but no evidence of intracranial disease. There is no specific time-frame for the exhibition of symptoms beyond the initial recognition of the facial PWS. Throughout the life of the individual, interrelated symptoms may manifest in glaucoma, cerebral blood flow abnormalities, headaches, and various other complications. Additional research needs to be conducted on this type of SWS to determine the course of the syndrome over its natural progression.
This info is courtesy of The Sturge-Weber Foundation.