Thursday, June 5, 2008
May may be gone, but NF awareness is not
One of my favorite things about the last week of school is all the fun and activities they have planned for the kids. One of the things Hayden had during in his last week was Buddy Day. It is such a great time for the kids. As I have taken the time to look back through these pictures I realize how much Hayden is growing up and how pleased we are at the young man he is becoming. I will be honest, when he was very little I was very concerned what his future would be like.
At nine-months-old we received the diagnosis of Neurofibromatosis Type-I for Hayden. When our pediatrician began telling me the possible things he could suffer from, once he got to seizure disorder, I didn't hear much else. We had all the testing done, MRI, hearing test, etc. Then we made the trek to Houston to an NF clinic @ MD Anderson. The head of the NF Clinic, Dr. John Slopis, put our mind at ease. Although during the year that Hayden was 2-3 years we had to go to Houston for MRI'S every 6 months due to a fear of him obtaining an optic glioma(which he ended up not having) his life has been good. When he was younger he walked with a limp and went through ECI Debt program to help him with motor skills and speech. We were concerned that he might have alot of difficulty as he grew. However through prayer and hard work Hayden is doing so well. We feel blessed at how well he is doing considering we know and have read about some individuals with NF that don't do well at all.
It gives my heart great joy when I see these pictures of him running, jumping and laughing because we never new if he would be able to do these things. The thing that gives me the most joy is that Hayden made the decision 2 wks ago that he wanted to become a follower of Christ. Our children's minister had some question if he really knew but after talking with him they have now doubt about his decision. This is what does a mom's heart good.
So although NF awareness month is over, don't forget about those that suffer from it and all the men and women that are investing time and money in the research for a cure. Bless all of them.