10-30-2004, 01:26 PM
Isabel came into this world on October 2, 2003 weighing in at 7# 14 oz. and measuring 20.5 inches, after a short labor of only 3 hours. When they placed her on my stomach, after she was born, I didn't see the "bruising". But a few minutes later, my friend, Andrea, noticed it and asked.
Later on, I found out that it was a port wine stain. But I didn't care, my little girl was healthy and that's all that mattered to me.
I had Andrea look up Port Wine Stains on the Internet, and she came up with the Sturge-Weber Foundations website.
At first I was like "Nah... She couldn't possibly have this syndrome". But because of the PWS, her regular doctor decided to go ahead and order pressure checks to be done on her eye. Both times they have been normal. On June 15th, we had a CT Scan done. The doctor called me back later on that day, and told me that her brain looked like a shrunken sponge on the right hand side. Of course, I was scared. On June 28th, after a contrast MRI, we got the diagnoses. "Sturge-Weber Syndrome". I cried. I couldn't believe that my child wasn't "normal".
Isabel or "Isy" as we affectinately call her, is now on Carbatrol, to control the petit mal seizures that she'd been having.
We saw a pedatirc neurologist on Sept 8, she recommends baby aspirin, half a tablet every other day. Then told me to keep her hydrated, and keep all appointment to have glaucoma pressure checks.
Isabel is about as normal as any one year old can get. She says different words, but isn't walking yet. She'd rather crawl.
On November 3rd, she has another appointment in Rochester, MN, to have her first laser treatment. I am both excited and apprehensive.
Later on, I found out that it was a port wine stain. But I didn't care, my little girl was healthy and that's all that mattered to me.
I had Andrea look up Port Wine Stains on the Internet, and she came up with the Sturge-Weber Foundations website.
At first I was like "Nah... She couldn't possibly have this syndrome". But because of the PWS, her regular doctor decided to go ahead and order pressure checks to be done on her eye. Both times they have been normal. On June 15th, we had a CT Scan done. The doctor called me back later on that day, and told me that her brain looked like a shrunken sponge on the right hand side. Of course, I was scared. On June 28th, after a contrast MRI, we got the diagnoses. "Sturge-Weber Syndrome". I cried. I couldn't believe that my child wasn't "normal".
Isabel or "Isy" as we affectinately call her, is now on Carbatrol, to control the petit mal seizures that she'd been having.
We saw a pedatirc neurologist on Sept 8, she recommends baby aspirin, half a tablet every other day. Then told me to keep her hydrated, and keep all appointment to have glaucoma pressure checks.
Isabel is about as normal as any one year old can get. She says different words, but isn't walking yet. She'd rather crawl.
On November 3rd, she has another appointment in Rochester, MN, to have her first laser treatment. I am both excited and apprehensive.