Born August 28, 2003. (07-02-2009) Our Kayli is almost 6yrs old now. She was diagnosed at 3 months when she started having seizures. A couple of months later her respiratory issues started and her lung collapsed several times. The doctors wanted to give up, but God and Kayli had other plans. They put in a trach to help her breathe and a mickey button for aspiration and reflux. She came through her surgery and has been fighting ever since. We tried to wean her off the ventilator about a year ago, but lungs were not strong enough, so she is totally vent dependent. The doctors told us she could not do a lot of the things she is doing now. She is happy and healthy and just graduated from pre-school. Her seizures are controlled with Tegretol and Phenobarbitol and range from zero to maybe 4 or 5 a day, less than 5 minutes in duration. She smiles and vocalizes a lot. Her favorite things to play with are ballons and a button switch on which her paw-paw sings songs for her to listen to because she loves music.