Sunday, August 28, 2011

A different kind of Perfect.

That day in May, when I saw Audrey's face for the first time, I made a decision. I decided not to tell many people about her condition. Why? Well, her condition will probably NOT affect her life in a negative way. If I never told you about it you may never know she had a challenge at the beginning of her life. I want her to grow up with out any prejudices or assumptions made about her, and have every opportunity to accomplish her goals and dreams. Now that I've been living with her condition as a part of my, her, and our life, I feel that I need to expain more about what we face when she returns home. Also, I feel that I'm leaving out a bit of her story that is SO important for all to understand just how AWESOME God is.
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

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
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 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.


  1. Shannan, these conditions are more common than some may think. I agree that she may have some challenges, but God has truly blessed her, not only with the blessings of life, but I believe all the struggles you have had with trying to adopt was just God's way of telling you he had someone special just for you. I'm so glad this journey is almost over for you and that you will have your little girl in just a few months. You are so deserving and will be an amazing mom!

  2. Amanda and Starfish are amazing. I'm sure they saved my daughter's life. The struggles they had with Norah to let her eat and how they dealt with the lung problems she had because of her heart condition.... And then they arranged for heart surgery! How do I ever repay the fact that they saved our girl's life..? Amanda sure is one of my heroes!

  3. WHY R THEY NOT FEEDING YOUR BABY??? TEE HEE...such a beautiful girl, made perfect in God's image. There is no stopping her now....she has the love of a family and God on her side.

    Why don't my thighs look as cute on me as they look on her?? The chubb on those arms is delicious looking...

  4. Wow, I'm in tears reading your blog! Thank you for friending me on FB! I'm so blessed to get to 'know' you and your delicious baby girl!! My baby Joy was left in a toilet, likely because of her thoracic region meningocyle (I will never remember how to spell that word!). She's been home since last June, turned 2 in November, and we have been doing therapy since October to try to get her to walk independently. In April we will do an MRI to determine if she also has CP and hydrocephalus. I can't imagine life without her!