Audrey was born with Cranial Mengocele Spina Bifida with Hydrocephalus. Because of her spina bifida she also has a Chiari malformation. Here are some definitions as to what that diagnosis means:
Spina Bifida is a type of birth defect called a neural tube defect. In spina bifida, a baby's spine does not close completely during early pregnancy.
- A cyst made up of membranes, which surround the spinal cord, protrudes through the open part of the spine.
- Spinal fluid can leak out.
- The cyst can be surgically removed.
- Development after surgery is usually normal.
Hydrocephalus occurs when excess fluid builds up in your brain, most often because of an obstruction preventing proper fluid drainage.
Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal.
Sure is a mouthful to say, isn't it? Basically Audrey was born with a fluid filled sac at the base of her skull. Since her fluid was protruding out of her skull, the skull has a little bit of a bigger gap in it around her spinal column than most of us have. I only have some basic information about her early months and hope to find out more when I go to China. What I know is that when Amanda got her, she was in a lot of pain from the pressure in her head. That was in December of 2009. In January of 2010 she was taken to a local hospital and had surgery to close the sack. She still was in pain and not well so a few days later a shunt was placed in her head to relieve the pressure. Since then things have gone well for Audrey. She is developing normally, though a little behind. Heck, she had brain surgery twice when she was two months old....I'd be a little behind if I had brain surgery. She should develop normally for her whole life and only we only expect her to have minimal restrictions....like not playing contact sports...which is fine with me. :)
We may have to have some physical therapy when we get home, we may not. We may have to have some speach therapy, we may not. She may have to have a shunt revision (brain surgery) when she gets home, she probably will not. The only difference we see in her is that she will have to visit a neurologist a couple of times a year to make sure the shunt is working. That is it. For someone left in a dying room when she was in the orphanage, she sure has come along way. Without God getting Amanda to Audrey, she would have been left to pass away. Without God providing her wonderful surgeons, Audrey would have suffered more pain and major brain damage. I've written before about how God has watched over her and blessed us with the Starfish Foster Home and Amanda. God has something amazing in store for this little wonder, and I can't wait to see what she does with her life. She had a rough start, and was not born under our definition of perfect. She is a different kind of perfect, and I think that is the best perfect, because she is the only perfect for me!
This week she recieved the scrapbook I made of me, Mom and Dad, Sophia, and her room. She also recieved a voice recoreded book that I read to her. Here is a photo of her with the books. Shang, the gal who took the photo, said she just kept smiling while looking at the book and while they were taking her picture. You can also see the chicken pox that she is recovering from.