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I am excited to see this group. I had twin girls at 28 weeks. Both had retinopathy of prematurity, but only one required laser correction surgery. This one is currently diagnosed with "visual maturation delay". There is a possibility of cortical visual impairment (brain damage that isn't associated with a problem with the eye itself) secondary to events at birth. She also shows signs of esophoria (tendency for eyes to turn inward). Our return appointment is in October and we were told to expect glasses at that point. She will be six months old corrected by that time. Her twin sister is doing great visually. She is actually ahead of schedule. We call her "eagle eyes". It is sometimes discouraging to see the difference between them visually, but I am getting used to it. She seems to be making some progress recently with fixation, but still has difficulty with tracking and anything at a distance. I look forward to learning from all of you.
Welcome. My name is Jennifer and my daughter Alexis has been blind since birth. She has septo-optic dysplasia, a very involved condition with optic nerve hypoplasia (optic nerves stop developing in utero), brain structure anamolies (missing septum pellicudum - the webbing between the 2 hemispheres of the brain), and pituitary involvement (growth hormone deficient and adrenal insufficient). She has had 2 MRI's, 3 CT scans to check for slow developing hydrocephalus, had extensive global developmental delays, and probably some form of autism. We go back to the neuropysch on the 24th to get the results of his eval, but he asked us if any doctor has every mentioned autism or autism spectrum disorder. So we know that's coming too.
It has been a very rough couple of years (she was diagnosed at 6 months). It is extremely stressful and very scary. I can only imagine how much harder it is with a developmentally and visually normal twin. But things get better, you learn more, get early intervention services to help normal development, and just love them for who they are. We are always here if you have a question, need to vent or anything.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
I have read on visual maturation delay. Brandon may have this issue as well. There is just not much information out ther on it. I have tried to find out more about it and haven't turned up much. I know there are some other ladies on this board with the same diagnosis. My son was a preemie as well but he didn't have ROP. He was a 33 weeker so I am sure that you have had a lot more health issues to deal with than we have. Although some days I think we have had it really bad. He has been through a lot but he is doing really well now.