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  #1  
February 11th, 2008, 01:24 PM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Welcome to VI children board. I am Jennifer, mom to Alexis, who was born with septo-optic dysplasia. She is now 5 and doing very well. It is very frustrating and scary and heartbreaking to here any sort of VI diagnosis. Alexis was diagnosed when she was 4 months old with the ONH and the SOD when she was 6 months old. I thought my life was over when she was diagnosed. But you adjust, you grieve, you pick up the pieces and you go on. Your little man will be perfect no matter what his vision turns out to be.

Is the opth. appt. this today (Feb 11) or next week, the 18th?

I hope you enjoy posting with us, and don't hesitate to post anything on your mind. We're here to help.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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  #2  
February 12th, 2008, 04:07 AM
Regular
Join Date: Feb 2008
Posts: 55
Quote:
Welcome to VI children board. I am Jennifer, mom to Alexis, who was born with septo-optic dysplasia. She is now 5 and doing very well. It is very frustrating and scary and heartbreaking to here any sort of VI diagnosis. Alexis was diagnosed when she was 4 months old with the ONH and the SOD when she was 6 months old. I thought my life was over when she was diagnosed. But you adjust, you grieve, you pick up the pieces and you go on. Your little man will be perfect no matter what his vision turns out to be.

Is the opth. appt. this today (Feb 11) or next week, the 18th?

I hope you enjoy posting with us, and don't hesitate to post anything on your mind. We're here to help.[/b]
thank you, i am glad to hear that your Alexis is doing well, the appointment for zachariah is 18th feb, little nervous but at least i will be one step closer to helping my son. it's such a confusing thing as i've never heard of it before now, there's been no history of this in either mine or my husband's family so we are really wandering around in the dark with this one. it seems very hard that the whole diagnosing process is such a long waiting game with one suggestion dependant on the next few months as i am sure all of you on here have felt or are feeling. But it's nice to hear everyone is coping in the best way they can and i am sure you all have gorgeous little children that are spoilt rotten.
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  #3  
February 12th, 2008, 08:38 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
I know it was really hard for us when Alexis was first diagnosed, she is the only one in our family with vision issues (other than the typical nearsightedness that can be treated with glasses). For her, it was a freak mutation that occured at about 6 weeks gestation that caused the optic nerves to stop growing and the brain structure and endocrine anomalies. Unfortunately, I don't know to much about DVM, but the one thing I will reallyy stress is to PUSH PUSH for vision services. They are a godsend and if I am not mistaken (may just be NY regs) any child diagnosed with a vision disorder/problem will qualify for vision services, even if no delay is specifically evident. Vision therapy will help stimulate and promote visual development, and will work on visual-motor skills, and most things visually related.

Again, welcome to the board and hope you enjoy posting here (though the reasons for posting here aren't always very happy ones). Keep us posted and let us know how the appt goes next week.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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  #4  
February 12th, 2008, 02:03 PM
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Join Date: Dec 2007
Location: bristol uk
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