By Geraldine, United States, January 25, 2014
Amanda was born a normal beautiful baby girl weighing in a 6 pounds 8 1/2 ounces and 19 inches long in 1985. She progressed normally until age 15 months when something went terribly wrong. After a very abnormal reaction to the MMR inoculation, she began losing everything that she had learned up until then and by the time she was 2, she was no long talking, climbing, running, laughing and she had begun to constantly tap her hands together. Her hearing went away but returned after a year. For the next 4 years the only sounds she made was to cry. All she did was cry and averaged only about 45 minutes sleep in a 24-hour period. I stumbled across Rett Syndrome while studying to get a degree in Early Childhood Education and sent everything I found out about it to her neurological pediatrician at that time. I kept insisting that Amanda had Rett Syndrome but he said it was autism with mental retardation. It wasn't until 2003 that we finally got the diagnosis of Rett Syndrome when Baylor College of Medicine isolated the gene that causes Rett Syndrome and we had her genetic testing sent there. Amanda is incontinent, non-verbal, has no self-help skills and requires 24-7-365 care from us, her Mom and Dad. How to you describe a child, the youngest of four children, who is both a joy and burden at the same time? How do I put into words that feeling we get when she does laugh out loud or give us that angelic smile and small chuckle? She is Heaven's very special child and we do all we can to make sure her quality of life is as good as it can be. I gave up my career to come home to take care of her and her Dad retired from law enforcement in 2007 so that we could be full-time parents to our daughter. We have travelled from Virginia to Baltimore, Maryland and to Houston, Texas just to get her to doctors who specialize in Rett Syndrome. his journey has been a tremendous learning and unconditional loving experience for us. Amanda Justine Woodley is a 28 year-old beautiful young lady with severe intellectual and physical disabilities. She suffered an adverse reaction to the MMR inoculation at 15-months old. Based on new research, we had her tested on March 11, 2003 and on June 6, 2003; we received the definitive diagnosis for her of Rett Syndrome. She has a very noticeable repetitive hand-tapping and hand-mouthing self-stim behavior that she does almost constantly while awake. This is a classic characteristic of girls and young women with Rett Syndrome.
Amanda cannot run, climb, or go down steps without assistance. Recently she evidenced emerging skill for going up steps independently. She is beginning to go up with her hands on the rails with minimal assistance. She is ambulatory, but walks almost constantly on her toes. However, she is not locked on her toes and can get grounded with her feet flat when prompted or when walking on uneven surfaces like gravel or rocks. We encourage her to walk with her feet down. She walks very slowly. For long walks or trips to the mall we use a transport chair if we are in a hurry but most times we just let her walk along with us. She was also diagnosed with bursitis in her right hip and favors her right leg and sometime will limp. We give her pain medication as needed.
She can sit and get up from a sitting position unassisted if the chair is not too low. She sleeps in a full-sized bed at home and can get in and out of her bed without assistance. She requires full assistance with eating, dressing, and toileting. She has no self-help skills and is a fall risk due to her very unsteady gait.
Amanda began eating food by mouth again on July 15, 2012 and continues to eat well at this point and has begun to drink more from a cup. Her G-tube was removed on October 18, 2012 due to continued issues with the tube leaking and becoming infected requiring it to be replaced repeatedly and that she is eating and drinking by mouth again.
Amanda usually has a very good appetite, with breakfast and dinner usually being her best meals, although she is beginning to get finicky about breakfast. She likes cheese & eggs, bacon, sausage, pancakes, soft waffles, oatmeal, cream of wheat, or applesauce over toast (to soften the toast), macaroni & cheese, well-cooked vegetables, and meats with gravies and sauces. She loves any kind of soft bread. She is fed a normal diet with regular foods; however, she does not chew very well. Therefore, all foods are softened, chopped, or mashed up with a fork but not blended or pureed. We do not give her crunchy or hard foods like cookies, chips, raw vegetables, or grapes unless they are crushed or chopped up very fine because she will try to swallow without attempting to chew posing a choking hazard. Anything hard or crunchy is chopped or minced and moistened with some kind of liquid before giving to her. Example would be to crush a cookie and mix it with yogurt, applesauce or pudding. We uses plastic spoons to feed her. She drinks from a glass or cup but will not drink from a straw. She eats better if fed from the right side and putting food into the left side of her mouth. She drinks water best at night before going to bed; but fluids are offered to her frequently throughout the day because she never drinks much of anything. Cow's milk gives her gas, but she likes her oatmeal made with almond milk instead of water and with added butter and cinnamon.
Amanda has no self-help or verbal communications skills. Her main way of communicating is with eye-gaze and loud vocalizations. She is showing that she understands well what you say to her and what is being said around her. We use the receptive communication protocols to encourage appropriate responses from her.
Amanda will become very agitated and fussy when she is hungry, sleepy, cold, or bored. She will hit at the side of her head when she is upset. She is non-verbal but is quite vocal and makes loud sounds when she is upset; as well as, when she is happy and excited. Amanda is incontinent and wears Attends Protective Undergarment pull-ups at all times. She is time-toileted at home which is working very well. Sometimes she will get up suddenly from a sitting position when she has to go to the bathroom.
Amanda loves music, especially light classical, smooth jazz, and Gospel. She also likes children’s songs from Walt Disney tapes and video sing-along tapes. She likes T. D. Jakes, Kirk Franklin, Yolanda Adams; she also likes Luther Van Dross, Patti Labelle and Whitney Houston. She likes to watch people dance. She used to love her videos like The Lion King, Beauty and the Beast, The Little Mermaid, Aladdin, Thumbelina, Tarzan, Hercules-anything that has a lot of music and singing. However, now she will only watch them occasionally . Lately she has begun watching football and basketball games and regular programming on TV in the den. Amanda loves company and loves to go for rides. She also likes to eat out. She is sometimes tolerant of hand-over-hand assistance now when getting her to participate in an activity, although she is quite inconsistent with this and will pull her hands away.
Amanda will also become agitated if she is too hot or too cold or feels chilled. She shows this usually by a high-pitched squeal or hitting her head. Always close the bathroom door when giving her a bath or shower if it is cool outside because she does not like to be chilled. Amanda likes to sit close to an adult and kind of lean over on them with her elbows. She also will back up to an adult and just sit down. She likes to be read to and look at pictures in books or magazines.
Amanda is very hairy and scratches her legs, stomach and back a lot. She loves to have her back scratched. We put lotion all over her body daily, face, arms, legs, and back. We keep her hair cut short because at one point several years ago she started to pull it out and it is easier to manage. We also put a little hair dressing on her hair every day and brush it every morning. She does not like getting her hair brushed but we insist. We brush her teeth with an electric toothbrush every day, morning after breakfast and at night before bed. She has prescribed toothpaste for night.and prescribed mouth rinse that is used morning and at night before bed.
Every day is a day of Thanksgiving for us that we have been chosen to walk this journey of Faith and Love with our daughter. Is it hard, YES! Do we often cry, YES! Are we tired, YES! Do we long and pray for a cure, YES! But we persevere and know that we can do all things through Christ, who is our strength.