Suzanne - posted on 12/29/2009 ( no moms have responded yet )
Hello I am just new to this board. My little girl who is 5, was born with a rare chromosome disorder, called partial 7q. Part of her 7th chromosome has been inserted into her 13th chromosome. She can't speak, she does make sounds, and is able to shake her head yes and no when we ask her simple things. She can make choices when we ask her out of 2 things what she wants (ex: toys, food, t.v shows) She wears glasses for astigmatism. She can't walk, she does have a walker in which she can take steps when aided. She can't stand on her own, but she does sit to stand with a small letter, and a small chair, again aided. She just learned to sit on her own last year. We have to feed her ourselves. She does eat solids, although she likes to suck on her food before she swallows it. She also has scoliosis and has to wear a soft Boston back brace. She is very low toned so she also wears leg braces when in her standing frame, or walker, and when she does her physiotherapy. Now getting to her heart defects. She was born with a small whole in her heart, which thankfully closed on it's on 2 years ago. She has a Bicuspid aortic valve. I am hoping we wont need to have her go through surgery.