Rett Symptoms Appear

They say girls with Rett develop normally until around 18 months old, then suddenly the child starts rapidly losing their skills. Sara could say mama and ball. She lost that. Her muscle tone has always been very low. She keeps her hands close to her chest a lot. Because of this horrible thing that most Rett Parents call "The Rett Monster", our sweet baby girl has never sat up on her own for more than a few seconds. She has never, stood, crawled, walked or really talked. She requires complete care, like an infant in a childs body. She can't really play with toys or write, her low muscle tone affects her motor skills. Sara used to eat like a piggy, but her low muscle tone started affecting her chewing and swallowing. She started choking on her food, vomiting and aspirating her food. She couldn't gain weight and was in trouble. We had to get a feeding tube for her in 2007. She still gets little sips of drink and some ice cream or yogurt occasionally. She started having seizures and is on meds for that. She has constipation issues and severe reflux and she is on meds for those things too. She has severe scoliosis as well and has borderline osteoporosis. She uses a wheelchair.
Despite all of this, she is and has always been a very happy, smiley, loving child. She giggles and laughs, reaches for us gives us hugs and kisses. She seems to understand what we say. She goes to school and loves it. She really is a blessing and I love her so much.