Why did I decide to call this page Amanda's Adventure?  Well instead of just focusing on Amanda's disease, I wanted to focus on Amanda's life and we all know that life is an adventure!

Upon Amanda's diagnosis with Sturge-Weber Syndrome I went scurrying to the nearest computer (which happened to be in the PICU at the hospital) to find out more about Sturge-Weber Syndrome (SWS).  What I came across was not a whole lot of medical information and even less personal accounts with the illness.  From that limited information, I did find some amazing stories.  Those stories, which I have read many times since that day have really helped me and my wife get through all this.  I decided to write this page for the next parent or family member who is searching the internet for any information, in hopes that Amanda is an inspiration for someone.  Perhaps I am getting a little ahead of myself since I mentioned this page is about Amanda's life and not just her illness.  Let me start at the beginning.

Amanda came into this world on November 26, 2001 relatively uneventfully.  Brandy's water broke, yet she was having no contractions.  Amanda was very active in the womb during the whole pregnancy and we are still convinced to this day that she decided it was time to see the world and kicked a hole in the amniotic sack.  We arrived at the hospital and they said they would give it the evening and then would induce the next morning if things had not started on their own.

About 5am on the morning of her birthday they came in and began pitocin to induce labor.  They also mentioned that if it did not get started on its own they would have to consider c-section as they don't like to wait more than 24 hours after the water broke to deliver.

Well the pitocin worked and by 5 pm we had our baby girl in our arms.  She was 7 lbs 2 ozs. And 20 inches long.  She came 2 weeks early as her due date was Dec. 9th.  That evening the pediatrician stopped in and examined her.  He said she looked great and mentioned that on her forehead was a birthmark that may go away in time or may need to be removed.

ANY QUESTIONS? COMMENTS?

Please e-mail me.  I would also love to add your stories to my web-site.  Please just e-mail me your pictures and story and I will add your very own page.

phoenixfla@comcast.net