Fall Fun...

So much to learn...

As you can imagine, I have been researching everything that I can about neurofibromatosis.  Not knowing just what the future holds is so hard and it breaks my heart. We did take baby girl to see her neurologist this week and pretty much she said the same thing as the surgeon, that I need to get her in with the specialist over at Emory. I told them we are on a waiting list but it could take up to a year to get in. It's so frustrating. However here are a few facts that I've learned about this condition...

1. Neurofibromatosis is a genetic disorder.

2This condition can cause tumors to form on the nerve tissue. 

3. Tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves.

4.  It is usually diagnosed in childhood or early adulthood.

5. The tumors are usually noncancerous (benign), but sometimes can become cancerous (malignant) so you need to be followed closely by an oncologist and dermatologist. 

6. Complications of neurofibromatosis can include hearing loss, learning impairment, heart and blood vessel (cardiovascular) problems, loss of vision, and severe pain.

7. There are three types of neurofibromatosis, each with different signs and symptoms.

8. Some people have very few tumors and some can develop thousands. 

9. One in 3 thousand babies is born with NF.

10. People with this condition may need to be monitored by several specialists throughout their life because it can affect many parts of the body. (neurologist, ophthalmologist, audiologist, cardiologist, oncologist, dermatologist, psychologist, and an orthopedic.) 

Please keep praying

 for our 

sweet baby

Update on our baby girl...

Yesterday, I took baby girl back for a followup from her surgery. We got the results from the pathology report and we did not get good news. The tumor they removed tested positive as (NF) neurofibromatosis. 

To learn more about this condition you can go to the Children's Tumor Foundation.  

They are referring us to Emory to see a doctor who specializes in this condition. Please keep our sweet baby in your prayers. 

Please excuse me while I brag....

This sweet little girl right here was selected as the character of the month! She was chosen from her class as the best person who represented the word COURTESY: polite, civil, and courteous behavior towards others in words and actions! I am so proud of her! She has such a sweet and caring personality. The teacher said that she is so loving and always cares about the other kids especially if they are having a tough day.  I hope she always stays that way. Way to go baby girl! Mommy and daddy are sooooo proud of you! (Her arm is casted because they removed a tumor from her arm)