Monday, July 6, 2009


The first time we heard the words.... Cerebral Palsy. Faith was 5 months old at the time, she had suffered a series of apneac (they make you stop breathing) seizures shortly after birth. We had spent 7 days in the NICU two hours from home, after a traumatic birth at a community hospital. Naively, we had brought her home, thinking our little girl was going to be your average little girl. Then we got the news from her neurologist. Your child is not "normal", she will never speak, walk, be potty trained or do all the things you hope for your child. By the way, have a nice day and don't let the door hit you on the way out! Ok, that last part was our perception after the brief, uninformed visit and a good shove out the door. I remember making it to the car, but not alot else on the two hour ride home. We didn't even know what CP was! Stupidly, we thought it was like downs syndrome. We were ignorant!
After the shock began to wear off, we began the exhausting process to learn about this disorder and what we might expect for her life. We were bombarded with government programs, early intervention, more specialists and bad news every way we turned. I was devastated and brokenhearted. True to what was predicted she was delayed, she didn't sit on her own until 18 months. Most kids do this around 6-8 months. At 7 months, she was diagnosed with a craniofacial abnormality called craniosynostosis. Her skull fused together prematurely causing the brain to be unable to grow. She had her first surgery at 10 months. The neurosurgeon broke all the bones in her skull into pieces, removing several small ones to allow for growth of the brain. She was in the hospital for 10 days. Three days after her first birthday, she had her second surgery, a PEG (percutanious endoscopic gastrostomy), placing a feeding tube in her stomach. On her first birthday she was 15 lbs when most children are up and over 20lbs. This is a "brief" overview of the first year of Faith's life. It was tumultuous and heartbreaking, we spend what seemed like months crying over a sleeping baby. There were many more good days to come as well as lots of hard ones.


Ellen said...

Welcome to the blogging world, Candace. I related to so much of what you've been through, both what you went through at birth and because Max also has microcephaly, seizures (under control with Trileptal) and CP. I hope you'll find writing to be as cathartic as I have. Nice to meet you and your beautiful girl!