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