A word I was totally unfamiliar with just 48 hours ago and one I have come to know VERY well since Thursday.
At about 6 months old I discovered some birthmark looking spots on Serene's legs and then about 7 or 8 more on other parts of her body. It seemed strange so at her 6 month appointment I asked her doctor about them. She told me to keep a watch on them to see if they increased in size and to see if any new ones appeared. After watching for a couple of months we were referred to a pediatric neurologist and had an appointment with him this past Thursday. Jimmy and I were both aware that these spots could be an indication of NF but we just didn't think it could possibly be happening to Serene.
Long story short, the doctor confirmed that she does in fact have NF. He referred us to the NF clinic in Fort Worth where we will take her for DNA testing in the next few weeks. NF is a genetic disorder found in 1 in 3000 - 4000 babies.
Please pray for Serene and for us as we deal with the beginning phases of this. This is just something you never think you will have to deal with and has really overwhelmed us. God is very faithful though and is giving us so much comfort as we seek Him.
You can read more about NF at www.ctf.org