Psalm 127:3-5

Behold children are a gift of the LORD,
The fruit of the womb is a reward.
Like arrows in the hand of a mighty warrior, so are the children of one's youth.
How blessed are those whose quiver is full of them
."

Saturday, September 27, 2008

Neurofibromatosis (NF)

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

9 comments:

Mary Margaret said...

hey tarrah-
just wanted to let you know that I'm praying for you and your sweet family! I'm so sorry yall are having to go through this. keep me posted on how I can be praying.

Rebekah said...

We will be praying for your family. God is faithful!

Jessie Sue said...

I will for sure be praying. Noah had 2 of those spots and they had us watching for more. Even though they said not to worry unless he got more I was still worried! A freind of mine has a little boy with it. He is 3 and in a study at children's Medical Center. Keep us posted! I am so sorry you are going through this.

Ruth said...

I came across your post because I have a google alert set up for NF. My nin year old daughter has this disease and we have been dealing with it since she was 9 months old.
I will be praying for you, and wanted to also let you know, please e-mail me if you would like to talk, or need support.
Ruth

Ruth said...

PS - my e-mail is britruthie@gmail.com

O Fam said...

Praying for you and Jimmy and little Serene! Much love!

Kim said...

Hi Tarrah. We are praying for Serene and for you and Jimmy during this process. God is so faithful & I know that He has Serene in His hands.

Nikki said...

Oh Tarrah...we are praying here too! When the boys were little they diagnosed them with a growth hormone def. and Brad and I took them to an endocrinologist for 2 yrs. By much prayer and intercession from many around us, even when my heart and mind were too tired to keep praying and, at times, too depressed to go on.....they were completely healed. THey received dire predictions at the initial diagnosis of it but here we are today living proof that God is indeed the great and mighty Physician who can heal. There are so many times when I wonder just why some people have to go through some of what they do. I do know all of this is being used to grow you and Jimmy into what it is God is shaping you to be and giving you a testimony to minister to others where others cannot. My heart aches for you and you are on my mind. We are here praying and know that when you do come to the certain points of having to deal with a major diagnosis, and are going through the huge swings that come with it, that there are prayer warriors all around you lifting both you and Jimmy up and surrounding you with prayer.

Amy said...

Tarrah-
I don't know you, but I feel the pain you are going through. I have NF, as well as my 2 year old son. I don't know why GOD selected our family to go through this, but remember that GOD doesn't make mistakes. (It's taken me a long time to realize this) Our families were chosen, and GOD has something special planned for our precious babies. I'm excited to see what GOD has in store for my precious son.

I've never talked to someone I don't know about this, but I found your blog online, and felt compelled to reach out to you. I am going to put your family on my prayer list. I know this is scary, and it's ALWAYS on your mind. I pray that GOD will give you peace of mind.

Please email me if you want to talk. My email address is
smamy2@yahoo.com

Take care--
Amy