mandyhurta's Journal

Amy will be 19 in December. She has Stage 4 Retts. But she is the best sister anyone could wish for. Has life been hard due to her not being able to walk or talk? cant say that it hasnt but you learn to adapt to it and come together as a family. She became tube fed at 3. She also had to have the metal rod put in for her scoliosis. I guess my point or stating some of her medical issues is that she hasnt let any of her syndrome disable her personality. I hear of stories where families are sad because they cant take the girls out or they have to hide the food because the girls steal food as they walk by the tables, and it makes me think of how amy was before she regressed. She stole a nectorine from our younger brother in my grandmas living room and ate everything but the pit in less than 2 minutes. I feel bad when i catch myself jealous of other families when i see their Retts girls walk. But thanks to some new break throughs and physical therapy Amy might be able to bare weight soon. At times i feel worse because im the older sister so i wonder why she got it and i didnt...enough sad things...back to that persoanlity, she laughs when someone gets into trouble she loves Toby Kieth most days he is all she will listen to by choice, if you change it she will scream until you change it back. Make her mad and she will give you the cold shoulder When she is ready to go to bed she will yell untill you turn on her music and turn off the lights. I love my Amy girl. My sister and my friend.