Nicole lives in a facility in Loma Linda, California called Totally Kids. The nurses there are all trained for Children with special needs. And Nicole can go from normal to de-stat… total oxygen loss in a few seconds. She turns purple… with lack of oxygen. The Nurses there have 24 hour monitors on her. We visit Nicole weekly as we have over the past 6 years and she is stable in her illness. No Pneumonia for a couple years now. The seizures are controlled by meds and VNS. But the meds make her sleepy and much of her life if spent sleeping. In her waking moments she likes to watch TV and listen to music. She cannot raise her head or sit up or talk… She does smile when we visit or when the nurses give her her bath. She resists and pulls away if a nurse has cold hands. She has a beautiful serene countenance around her and seems a mixture of happy and sleepy. She cannot swallow properly so risks the chance of choking on her saliva…. this is pretty much constant. But she now has the strength to cough… which she did'nt have the first couple years of her life. She has had pneumonia as many as 6 times in a year but is a fighter and keeps coming back from it. But they tell me she has scars on her lungs from these numerous cases of pneumonia so her breathing is impaired. She is on oxygen most of th time. She eats with G-tube. She's had that since 3 months. So she's never tasted real food… or water or anything orally. It chokes her. She smiles when we take her outside… she loves to look at the trees and clouds. Her vision is good from her right eye and she's 90% blind in the left eye … can see only light and dark. There are 15 other kids with various illnesses in her facility. And the Circlebrook section of the facility houses another 150 kids who are actually worse off than Nicole. All have tracheotomies and a very high percentage are totally un-responsive.