We were told that Ashley was
most likely a vegetable. She was put on dialysis at our request and kept alive, even though
some doctors felt it would be better to let her go. Ashley did great! Her kidney function
picked up and she was discharged from the hospital at 4 weeks. She no longer needs
dialysis, although her kidney disorder is progressive. She will one day need a
Ashley was born with 13 fingers and 11 toes. Her extra digits were removed when
she was 9 months old. She is left handed, and a bit delayed in fine motor skills. Ashley is now in kindergarten. She attends a regular class all day long and gets pulled out for extra help in speech, fine and gross motor skills and math.
Ashley has retinopathy, night blindness, and wears
glasses. Her vision is pretty good, 20/60 in her worst eye. (She is beginning to be a better tester! She now remembers the figures on the chart and repeats them even when it is obvious she cannot see the small print!)
She gets afraid in the dark, especially if it is unexpected. She has really no night vision at all, even dimly lit areas are difficult for her. Ashley has recently started having a problem with her eye drifting out. If this continues to worsen it will have to be surgically repaired. So far it is not effecting her vision. She gets visual training twice monthly at school.
Ashley has diabetes insipidus. This means her kidneys don't concentrate urine
properly. Due to this factor it has been very hard to potty train her. She is getting better
now though, wearing "big girl" panties during the day. She drinks and voids approximately 4 - 5 liters of
liquid daily, so this makes it more difficult. She is prone to becoming dehydrated so we
continually keep water available for her.
Her diabetes insipidus has begun to be a bigger problem for us. Ashley's kidney function has continually gotten worse and because of this she seems to become dehydrated more easily, especially if she is getting sick with a cold. She has been hospitalized for this problem several times in the past year.
Ashley has always been a big child. She is now (1999)6 years old and weighs 93
pounds. She is always hungry, but we are strict on her diet. She had a metabolic cart
study done that showed she was using only 800 calorie daily, (while asleep). We try to
limit her to around 1000-1200 cal. per day. It is very hard. She has not been gaining very
much this past year, so we hope she is finally stabilized.
Ashley was very short as an infant, not even on the growth chart for height, and
clear off the other side for weight. She spent a year on growth hormone therapy, taking a
shot each evening. This was hard on us as parents, having to inject her, but she grew like
crazy! She is currently on the 50th percentile for height, still very far off the chart for
weight, but looks more appropriate.
Ashley has been diagnosed with sleep apnea. She always snored and tossed and
turned. She was found to have very little REM sleep, and was having approximately 11
apnea or hypo apnea episodes per hour! She sleeps on oxygen now and had her tonsils
and adenoids removed. This has helped her some. She sleeps better now with less
snoring. She has lots of ear infections as well, and has had five sets of ear tubes.
Ashley is a wonderful child! She is happy most of the time, is a bit bossy, (like
all kids), and very sweet. She is smart for her age, but sometimes emotionally out of
control. She is very emotional. Ashley has an excellent memory and can play complex
games. We are hopeful she will go far in this world. We believe that opportunity
availability is her only obstacle. She will go as far as she is given the chance to