9 years old
Neeley was diagnosed at 3 and half months old. Neeley had brain surgery to stop her seizures at the age of 2 and then they slowly started coming back. We also have changed doctors because her doctor said her seizures were a behavioral issue. Joy's we have experienced is neeley is able to do almost everything she was able to before her surgery. She also has started doing sports and dance.
Neeley first started having seizures on July 4th 2010. We had just come back from the firework show and I noticed her arm and hand were twitching but she was asleep so I thought she was dreaming. The next day I dropped her off at my mom’s house and went to work. I got a call from my mom saying I needed to get Neeley to the hospital bc she was having a seizure. I sped home and took her straight to the closest ER. Her primary doctor sent us to Dell childrens in Austin Texas where Neeley was diagnosed with SW.
She had one good year seizure free and then her medication stopped working and from there we never found medication that worked. The doctors told me surgery was the only option because she was having so many seizures. Dr Keough and Dr Lee performed a hemispherectomy on June 20th, 2012. I was so scared.
During the surgery they removed a portion of Neeley’s right brain and disconnected the left side from the right side to stop the seizures. The surgery was the longest 12 hours of my life. I never left Neeley for more than a few minutes because I was scared she was going to die.
After her surgery Neeley has had several set backs. She had to relearn to walk and eat. She was in therapy 5 days a week, 3 hours a day for several months. She has made huge improvements. She can’t use her left hand anymore but she can move her left arm. She also wears braces on her legs and left arm. She wears glasses too because she lost some of her vision. She also has some developmental delays but they are not too bad. I thought the surgery was the best option at the time but now I wish we would have tried other options that I didn't know about at the time.
Neeley has started doing sports and dance. She is now able to do almost everything she was able to before her surgery and we are so thankful.