Originally Posted by smurph
You are totally right. We went into the appt. yesterday thinking we were done and we need to stick with that, especially with Faith's feelings about it. Now that she is 6 she should have a say in what happens. I was thinking of emailing one of the doctors but since it's not urgent...I was thinking of maybe waiting until the next conference and maybe having the docs take a look and asking them a few questions at that point???
Who knows what kinds of treatments will be available down the road anyway? Things have changed so much even in the past 6 years since Faith first started on the oral steroids!
By the way, did I tell you about Faith's book? She wrote a book called "Faith's Birthmark." We recently got it printed through Snapfish...it came out so cute! She sent a copy of it to Donna and Evan and we are about to send a copy off to Dr. Linda this week! Yesterday, we gave one to Dr. Mulliken so they can keep it at the office at Children's Hospital in Boston for other children to read who may be going through something similar. We had Faith "autograph" the book. She was so proud! Today, for her reading homework, she told me that she wanted to do a "Reading Response" on the book she had written! She got a kick out of writing down her own name as the author! So anyway, yesterday was an overall positive day.
I DID hear something about Faith's book! Tell her I want to score an autographed copy too!