BLIND BABY Q&A - NORRIE DISEASE. Live, learn, educate.

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  • Опубликовано: 18 дек 2024

Комментарии • 23

  • @reneegrace4501
    @reneegrace4501 Год назад +1

    You're doing a fantastic job. My blind great-granddaughter is 20 months old and still won't eat anything that even has lumps in it. She has Septo-optic Dysplasia and Optic Nerve Hypoplasia so her eyes are normal but her optic nerves are underdeveloped. It's hard for a sighted person to comprehend just how much a baby learns from vision. One thing for sure, they do what they want to do on their own time, not ours! I watch her three days a week so I'm learning along with her. Jensen is adorable and he's really blossomed!

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад +1

      I’m so glad you are keeping up with Jensen and his progress. But yes it’s so true. We can help, guide and prepare but ultimately they decide when they want things to click. Time and patience. Your great granddaughter is lucky to have you!

  • @donaldotrumpez669
    @donaldotrumpez669 Месяц назад +2

    Always remember, our kids with norries, we adapt to their normal. My son 13 now. And blows my mind how much he has accomplished. I can FaceTime and you can talk to him personally. Do you have an email? He has hearing aids now. But it’s mild, something we monitor.

  • @sheilamesick5964
    @sheilamesick5964 Год назад +1

    Good job Mom & Dad educating us about Jensen. Nap time he sounded like he was responding to someone's jokes. Good to hear from you.

  • @BrentMyhand
    @BrentMyhand Год назад +1

    Great job!

  • @KelliKyle
    @KelliKyle Год назад +1

    We're both doing Q&A videos this week! Mine comes out on Friday. I also have worn a heart monitor several times; I have Mitral Valve Prolapse and SVT and had a heart ablation. I hope you get answers!

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад +2

      Hey mama! Too funny! I’ll have to check your video out!
      Unfortunately my monitor shows abnormalities but still within normal but with a heart rate of 26. So still trying to find answers.
      Advocating for our sons is one thing but advocating for myself is a struggle lol I’m sure you can relate.

  • @joshspencer3380
    @joshspencer3380 Год назад +1

    Question: how will his first haircut and first dentist appointment go???

  • @debbiemendoza1944
    @debbiemendoza1944 Год назад +2

    Will the OrCam help Jensen?

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад +2

      That is a great question! I know there is so much great technology out there, we are just waiting until Jensen is age appropriate. I will have to ask his care team on their thoughts of this being an option in his future! Thanks for asking

  • @Fe4Christ
    @Fe4Christ Год назад +1

    Can you recommend any books on raising a blind baby/toddler?

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад +1

      This is such a great question and I’ve been putting it off because I have a couple scattered around my house. I will get back to you!

    • @Nada_Hussein
      @Nada_Hussein Год назад +1

      I’m interested too … please let me know if you recommend such a good book

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад

      I haven’t forgotten. I have some books. Just need to remember to respond when I’m at home and can look at the actual title!

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад

      www.amazon.com/Reach-Out-Teach-Visually-Impaired/dp/0891284575/ref=mp_s_a_1_1?crid=118WMVZEV2NIZ&keywords=reach+out+and+teach&qid=1679252994&sprefix=reach+out+and+teach%2Caps%2C184&sr=8-1
      www.aph.org/product/laptime-and-lullabies/

  • @patriciaharlen4823
    @patriciaharlen4823 Год назад +1

    Jensen! Lol! Typical boy trying to take everything apart. His hair is getting darker and thicker. I so look forward these videos.

    • @LifewithNorrieDisease
      @LifewithNorrieDisease  Год назад +1

      Thank you so much! He is all boy! So funny that you say that because we were just commenting on how his hair is getting darker (and slowly thicker)

  • @donaldotrumpez669
    @donaldotrumpez669 Месяц назад

    Can I contact you? I have a lot to share about norries. Retina specialist Dr. Brinton of East Bay Retina Specialist. Bay Area Ca.

  • @yarydreasadventures3337
    @yarydreasadventures3337 Год назад

    Non 24 is a sleep condition that can affect blind people that have no light perception

  • @YT123Z
    @YT123Z 11 месяцев назад

    Baby can’t see and baby got blind vision 😢❤ sad