Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 hi amy & vicki, just wanted to welcome you to this wonderful group, where you will almost always get an answer to a question, and support when needed. i have a seven year old son, and four year old twin son & daughter. my daughter, anna grace, has been dx with leighs. anna grace is nonambulatory and nonverbal. she communicates through facial expressions and verbal sounds. lets you know what she needs/wants. she does crawl (which we were once told she probably would never do). she is gtube fed and does not have full head control (less when she is sick/tired). she attends preschool 3 mornings a week and will start kindergarten in the fall. she absolutely loves school, and loves being with other children. she is very social. we dealt with the " mito " dx relatively well, but when dr. shoffner first said " leighs " , it felt like a brick had been thrown in my face. however, we have a wonderful support network of family and friends. we just take it day by day and try to enjoy every minute. i do think about anna grace's prognosis frequently, but try not to let it get me down. she is a precious little girl who brings joy to all who met her. and we are trying to give her the most loving, fun environment to live. please feel free to ask any questions you may have. take care, Bethany mom to brennan 7, palmer & anna grace 4 Quote Link to comment Share on other sites More sharing options...
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