Monday, April 14, 2008

My sweet Will


Hello friends,


When Will was 5 months old, I noticed a patch on his lower back. It looked like raised flesh colored stretch marks. When Will was a year old, my pediatrician asked that I see a dermatologist. The Dermatologist said that it was a Nevus of some sort and that it would all come together and turn dark Brown. My Pediatrician thought I should get a second opinion. We got one and she referred us to the Neurologist. She said it looked like a Shagreen Patch.

Will’s Neurology appointment was on Wednesday, April 9th. Will was diagnosed with a Shagreen patch which is commonly associated with tuberous sclerosis. He is going through genetic testing to see if he does have tuberous sclerosis. If he does, his case could be very mild (no real problems at all) or severe (possible growths on his major organs including the brain.) Here is a brief description…

Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.

We know for sure that Will is not delayed in his cognitive development at all. He could name letters and numbers at 1yr and ½ (we love to show that off!) At two he could match up your car with one of his from his Hot Wheels collection. He is just so brilliant! Of course, I’m not biased at all! He does not have behavioral problems, and seems quite healthy. Our prayer is that he has NOTHING at all!

Will has numerous appointments that will further test for TSC and tumors. Please keep us in your prayers as we learn more about Will's condition and TSC.

If you have a prayer list at church, I ask that you please put Will on it.

I will keep you informed as we all learn more.


10 comments:

Brandon Cunningham said...

You have all our love and prayers.
Brandon & Renee'

Susie said...

Praying for you guys and linked on my site. Keep up posted!

Twisting his arm said...

You are at the top of my prayer list.

I used to work at the neuro clinic at Driscoll (if that is where you are going) and the nurses and docs are WONDERFUL and know their stuff!

Keep us posted.

Ray, Jayme, Caeleb, Alaura & Hailey said...

I will definitely put him on our prayer list at church. He is a precious boy and we will include him in our prayers every night. By the way I am so happy to see your blog page! I will write more later! Your page is great!

Alene said...

Girl, you know I'm praying. Thanks for sharing and asking. I'm praying you will witness a healing and the glory of God upon your little one. You and your family are special to me!!!

Cheryl said...

Leslie, I'm praying specifically for you that the peace that passes all understanding will GUARD your heart and mind!
Keep us posted!

DA Wagners said...

I will be praying for your little man!!! God is all over this, and you have an army of people praying for Will!

Kristen said...

Leslie,
I'm praying for your family and sweet little Will. I'm praying for his health and healing and for God's peace to cover you.

littlerad said...

I'm praying for little Will and your family...
Connie

Shonda said...

Visiting from Alene...Will and your family are in my prayers and will be added to the prayer list at church. I'll watch for updates.
In Christ the Solid Rock we stand...