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Ashley Marie Vega By: Stacie Noakes
Ashley just had her second b-day last Friday, Jan 3, 1998. Ashley was born in Nacogdoches Memorial Hospital in Nacogdoches, Texas. She was not diagnosed w/ any impairments until she was 5 mos. old. We had a very hard time getting any doctor to listen to our concerns. I knew that she had nystagmus. It was painfully obvious. She was born with an apgar score of 9 and seemed to be an all around healthy child, except for the jittering of her eyes. Once I got a doctor to pay attention he sent us to another doctor who sent us to two other doctors. Their worries had nothing to do w/ her eyes. They were all concerned with the size and shape of her head and the fact that she could not sit up yet. She started rolling at 2 mos. They set me up w/ an opthamologist just to humor me. He confirmed what I already knew, he just put a name to it; "Optic Atrophy". An appointment was made for her at "The Bluebird Circle Clinic for Pediatric Neurology @ Baylor College of Medicine." ( ain't that a name!) in Houston, Texas. They did what seemed like a thousand tests including an MRI & CT. They said she probably would never walk or talk properly. In a call from her doctor yesterday, Jan 7,1998, we were told that they would go with the diagnosis of SOD even though the did not originally confirm that diagnosis through the earlier tests. In the first MRI at 8 mos, they did not find the septum pellicidum(?). She has an under developed pituitary stalk. Despite all she's doing quite well, without medication, Her growth is monitored very closely. She is now showing some signs of blood sugar problems, her glucose is usually way up there. I have never seen a critter so small drink so much without floating away.
She does repeat things over and over and over and over,well you get the picture. She crawled at 16 mos and walked a week after that. She can recite the ABC's and count to ten and can say up to ten word sentences. She can identify at least 2 dozen people by their voices. She can identify at least 50 objects indoors and out to the point that people argue with me about her being blind. Now, if we could do something about this massive appetite and attitude we'd be okay. To wake her up in the morning, usually about 3 hours after she's gone to sleep, all I have to do is say "eat". If you try to wake her any other way she comes up fists flying. She has a beautiful smile and a laugh like music. She loves her 2 big sisters and her baby brother to death, though we have to break them up a lot for fighting. She wrestles with her older sister and sings all the time For a child who was expected to say very much she sure is a motor mouth! But,the best thing is she's here and she's loved by every one and she's mine.
