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

[@reneegrace4501]

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]

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!

[@sheilamesick5964]

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.

[@LifewithNorrieDisease]

Thank you. Yes, I think Jensen thought himself a natural comedian 😆

[@BrentMyhand]

Great job!

[@LifewithNorrieDisease]

Thank you 😊

[@joshspencer3380]

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

[@KelliKyle]

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]

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.

[@patriciaharlen4823]

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

[@LifewithNorrieDisease]

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)

[@debbiemendoza1944]

Will the OrCam help Jensen?

[@LifewithNorrieDisease]

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

[@yarydreasadventures3337]

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

[@LifewithNorrieDisease]

Interesting! Haven’t heard of it. Thanks for sharing!

[@Fe4Christ]

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

[@LifewithNorrieDisease]

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]

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

[@LifewithNorrieDisease]

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]

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/

[@YT123Z]

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