Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife
Saturday, May 12, 2012
Saturday, April 21, 2012
Wednesday, April 18, 2012
communication
The older Sadie gets, the more communication gets to be a larger issue. People look to me to be her voice... her voice for all aspects of her total care. "Should I feed her, should I change her wet clothes, should I change her pull up, should I get her a snack, a drink, a toy, a game, shoes, socks, coat, sunscreen, should I stand by her side, assist her, hold her hand, give her space, hold her, sit with her, create an activity for her?" those are among the few questions I get on a daily, minute by minute, hour to hour basis when someone is caring for her who isn't capable of intuitively understanding the needs of a person, but more especially the needs of a person that can not speak traditionally with their voice. This is probably the most challenging hurdle I've had to cross with her care givers. Getting them to see her as a 7 year old and treating her as a person with choices, feelings, both physical and emotion, with needs just like any other child to balance her disability with giving her space has been tough. I hate that people see her with out the ability to actually have choices and be able to have her wants and have those respected. She is a person, a human being, a child.... presume competence people.
Wednesday, April 11, 2012
Sunday, March 18, 2012
Sunday, March 11, 2012
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