We have never stepped away from showing her the difference in between her and others. At times she gets upset bc we are having it removed w/the lasers. We told her when she was about 2 that it was God's Handprint on her face (that's what it looks like), that as He ushered her into this world His touch stayed w/her. Because of that comment she gets upset at times that she's having it done. She understands a lot more than most kids that are her age but then again most kids that are her age don't have this. We have shown her pictures online of other children w/PWS and other Vascular birthmarks, and the of course she sees a lot of them at the Shriners hospital. She also sees a lot of children w/burns. The very first time we went out there (She was 2) she said to me..."Mom there are kids out there that look like me..." It floored me bc I thought we weren't emphazing her "looks." From then on we just kinda backed off a bit talking about the birthmark and the difference between her and other children. I don't know if we did well w/that or not...As the mom I think I worry more about this than I should.
As far as SWS she had an mri w/contrast when she was born and has had a couple of CT scans since then....not bc of the birthmark but bc lol my child is just like me matter of fact both my girls are...We are clutzes.. HAHA! On all of the CT scans there has never been anything present on the brain and on the MRI she was 100% normal. Or so the doctor said lol. Sorry it's very late and ya'll have to think I am a quack lol. I have a tendency to actually type the way I would speak...
Please wish us luck on her surgery on Friday. I am looking forward to going again finally. She is too, her favorite thing about Boston is the aquarium and that's our first stop after we eat lunch when we arrive tomorrow.
I will post when we get home a report but it prolly won't be till Sunday usually we are all wiped out the first day.
Thank you for taking the time to read this. Oh and in my profile is our website if you would like to take a look at it.