|Cecely at Mission Children's|
Cecely was born prematurely and diagnosed with a mild form of Cerebral Palsy when she was 4 years old. Her symptoms were slurred speech (due to lack of muscle tone in the jaw), tremors in her arms and legs, the drawing in of her left leg and arm (especially when fatigued), and extreme rigidity in her muscles. As Cecely went through elementary school, we discovered she had academic developmental delay due to the CP. We went through many ups and downs in getting her the help she needed to be successful in the classroom.
|Two of the siblings with Cecely.|
Over the past year, Cecely began complaining of new symptoms, mainly severe leg pain. She would be in pain to the extent that walking was becoming difficult and tearful. We scheduled a check-up with her neurologist who originally diagnosed her. At that visit, the doctor said he was "baffled" by what we were telling him. CP is a stagnant disease, meaning the symptoms Cecely was born with would be the same symptoms forever. She should not pick up new symptoms. He ordered a CT scan and MRI where he and another neurologist discovered that Cecely has an atypical form of CP. They also discovered a pattern of mineral deposits in her brain that raised questions. The neurologist recommended that we visit a genetic doctor to get more information.
|Daddy Brian and Cecely|
We visited Dr. Allen at Fullerton Genetics in Asheville. The facility is wonderful. The staff is the greatest. Our check in nurse was like a grandma--very sweet and cheerful. She actually encouraged our entire family to go into the exam room with Cecely. I loved this, because all of the kids could hear and see what the doctors and Brian and I were discussing; and, the kids were able to ask questions and even answer some. The lady who came in to do the genetic interview before the doctor was amazing. She had a million questions (I don't think I am exaggerating on this one) about my family, Cecely's dad's family, and Cecely's birth story. The entire time I was talking, she was making a map and furiously taking notes...all with the loveliest disposition. Dr. Allen came in next, and he was fantastic! He was comical while being extremely informative. He ordered a series of tests for Cecely. We were off to the lab, then off to wait.
A few weeks later, we heard back from the genetics doctor office about Cecely's lab work. The results for the first panel of testing were all normal. This was good and bad...good to know what she didn't have, and bad to not know what she did have. The appointments to the neurologist, the MRI, the CT scan, the genetics doctor and the lab had brought in a pretty heavy medical bill. The genetics office told us that there was another wave of testing, but that it had to be approved by insurance before proceeding because it is a $5,000 expense. Brian, Mark (Cecely's dad), and I agreed to wait and see what insurance would do before going further. We knew we would do whatever it takes for answers for our girl. The bottom line is, we want to know why she is in pain and what we can do to help her.
|My not-so-little girl.|
On a side note from a bragging Mom, please check out Cecely's Corner on Instagram, Facebook, and You Tube. Cecely started a social media campaign to tell her stories, to learn the stories of other people, to encourage people with disabilities, and to educate and encourage people who have someone they love who has a disability. Please go to these sites and like and share her page. Watching her videos will give you an instant lift in your spirit!
Click here to view Cecely's Corner on You Tube