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My name is John and I haven't posted in awhile (Year and a half?)
My daughter Hannah (now 2 years 2 months) was born with Optic Nerve Aplasia (no optic nerves) and partially deaf (No left ear, partial hearing in right). She has a hearing aid. She had her right eye removed 4 months ago, due to a detatched retina and now has a prostetic eye. She is not having any other issues; just the ones that blind children have. She can stand and "cruise" along the walls...every once in a while, walk a few steps on her own. She does NOT sleep very well and is up most of the night. She is not speaking beyond "mama" and "dada".
My wife and I will be visiting the Western PA School for the Blind in a few weeks...just to see it and keep it as an option.
We are thankful that even w/ the "issues" we face, that we are blessed to have such a wonderful child!
Welcome back. I'm Jennifer, the new host here and my daughter Alexis was born with septo-optic dysplasia (the more severe form of optic nerve hypoplasia with mid line brain deformities). She has some vision (about 20/400) but has a lot of other issues including the midline brain deformities (she has the absent septum pellicidum). She is 5 now and has been globally developmentally delayed since she was about 12 months. She never walked until she was about 2, never spoke until she was almost 3; she still delayed in speech, gross motor, fine motor, and is placed in a 12:1:1 special ed class for kindergarten (she will probably be here for a while). She has a growth hormone deficiency, primary hypothyroidism, and is adrenal insufficient. On top of all that, Alexis is being followed for potential hydrocephalus, and next Monday will probably be diagnosed with some form of autism spectrum disorder.
Hopefully the School for the Blind will be a great place. I know the one near us tends to be more for children with multiple severely disabling conditions in addition to the blindness. Cognitively, Alexis seems to be all there so we felt that environment was too restrictive. I'm glad that she is a wonderful beautiful little girl. Hope everything continues to come along. Hope to see you around the board.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>