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  1. #11
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    I would love more info about the nystagmus surgery, thanks. We are in NSW but will travel! The Nystagmus, I think bothers Jade the most because she cant control the movement and it's obvious.. My saddest memory of her younger years was when she was about 3 and she was standing in front of the full length mirror, right up close, and she said "Mummy, why won't my eyes stop moving". It broke my heart, I think it's the first time that I allowed myself to really cry about her vision loss...

    Jades visual acuity is 3/60 in her left eye and light perception only in her right.

    I started putting Jade in occassional care a couple of hrs a week when she was 2 as Jade was our first child and I wanted her to get used to other children, I have never been so anxious in my life! I was always early to pick her up... As usual, she was fine!

    It makes me smile to think back when Jade was your daughters age! When Jade was 2 we used to go to playgroup at Vision Australia in their sensory playroom, it was so much fun!

    Jade went to a reverse integrated pre-school in Newcastle called the Tingara Centre, run by the Royal Institute for Deaf and Blind Children. When the pre-school was first suggested to me, I was totally opposed to the idea. I wanted Jade to go to "normal pre-school". My husband and I went and had a look and immediatley fell in love with it! They had 2 rooms, 1 room has Vision Impaired & Non Vision Impaired and the other room has Hearing Impaired and Non Hearing Impaired kids. The kids without sensory disabilities outweighed the kids with and they acted as role models (not the words I'm thinking of) for the kids with vision or hearing loss. The student/teacher ratio was about 3-4 students to a teacher who has masters in special ed. It was amazing and a fantastic foundation to begin her schooling. I sent my younger daughter who does not have a vision impairment their too and she loved it!

  2. #12
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    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    Hi loukev,

    I'm so sorry that I only just saw your reply now, 3 months late!

    I can't send you a private message as you only have 3 posts.

    So I'll just put the details here. I hope that's okay with the mods.

    Dr Lional Kowal (kov-el)
    Level 3
    182 Victoria Parade
    East Melbourne 3002
    Ph: 03 9671 3244

    He is the Australian expert on all things nystagmus.

    If he suggests that your DD is a candidate for surgery, he will send her for eye movement recordings with Dr Larry Abel, and they will go from there.

    We tried to do the eye movement recordings about a year ago, but DD was just too young to cooperate. I'm hoping we can give it another go soon.

    Please let me know if I can help at all.

    Best wishes

  3. #13
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    Hi Ladies,
    So glad to have come across this post.
    my son (4mths) has just been diagnosed with ONH and Nystgmus.
    We are just getting back to normal this week and are now looking around for options playgropups etc.
    Our little man is amazing, and it struck a chord when you talked about your anxietites, as the future for him is all I can think about.
    There seems to a lot of bogus talk of stem cell operations in china and the like, thats pretty sad
    What an insiration your tories are, I am sure Rowan will go on to amaze his dad and I (and scare us silly along the way

    We have yet to go through the scans and tests to exactify his levels of sight etc, that will start next month. Luckily we have a great paediatrician , who seem very positive.

    Great to hear about the specialist in Melbourne (we are in Sydney) def keeping in mind for the future.

    Hope to speak soon

  4. #14
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    Hi ladies just wondering if anyone is active on this page ?


 

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