- Видео 158
- Просмотров 363 316
Life with Norrie Disease
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Добавлен 3 янв 2021
My name is Jillian and my son Jensen was born with a rare condition called Norrie disease. This is our journey as we navigate through life with a blind child who is at risk of losing his hearing as well as a broad range of other complications.
DISNEY WORLD SPECIAL NEEDS - BLIND CHILD
Join us as we relive the magic of our first family vacation to @DisneyParks
Jensen is blind, nonverbal and developmentally delayed. Taking a big vacation is scary, but Disney made it worth it!
Jensen is blind, nonverbal and developmentally delayed. Taking a big vacation is scary, but Disney made it worth it!
Просмотров: 261
Видео
1st VACATION as a SPECIAL NEEDS FAMILY
Просмотров 294День назад
It's scary to get out of your comfort zone with your new baby, but it's even scarier to get out of that routine as a special needs parent. I was SO nervous for this vacation. However, we left with my heart feeling so full. In the end it was a lesson learned that I can't let my insecurities take away from the opportunity for Jensen to show me what he is capable of in a different environment!
SPECIAL NEEDS SAFE ROOM
Просмотров 1 тыс.14 дней назад
Jensen is outgrowing his "tent bed." We decided to transition him to our smaller bedroom in the house. We would allow him to have full access in a safe environment. This was the best decision we could have made!
WE DISAPPEARED. But why? Special Needs Family.
Просмотров 37621 день назад
Oh my goodness! It feels so good to be back! The past year was full of many adventures, some of which I forget to mention. BUT our absolute favorite adventure was the most recent! I can not wait to make a video covering Jensen's first trip to @disneyparks
WI DELLS with BLIND TODDLER
Просмотров 7538 месяцев назад
For our wedding anniversary we decided to take Jensen for a night stay at the Wisconsin Dells indoor water park. Jensen had a pretty good cold going, was fighting constipation and had a rough night. However, I couldn't be happier that we made the decision to take him because we had a blast! Just made us realize that we can get out of our comfort zone and try new things!
RENOVATION TOUR w/o tending to a toddler!
Просмотров 3149 месяцев назад
Our prior video showcased our house renovations featuring Jensen. However, balancing that and a toddler was difficult. My husband did a fabulous job on the house so I wanted to make sure he got the credit with a full video dedicated to before and afters. Thanks friends! Prior video: ruclips.net/video/v_aKpru4KN4/видео.html
VITALITY of our AREA EDUCATION AGENCY
Просмотров 36411 месяцев назад
This video was originally created in the spring of 2021 for a private audience for a routine board meeting regarding our local Area Education Agency (AEA). Little would I know that I would have to use it publicly years later in order to raise support and awareness to our government on how vital this agency is to our community. Unfortunately, there is a potential bill to be passed which will dir...
BLIND TODDLER and HOUSE RENOVATIONS.
Просмотров 1,2 тыс.Год назад
BLIND TODDLER and HOUSE RENOVATIONS.
Blind Toddler explores botanical garden with belt cane!
Просмотров 690Год назад
Blind Toddler explores botanical garden with belt cane!
BLIND TODDLER MORNING ROUTINE. School day.
Просмотров 2,1 тыс.Год назад
BLIND TODDLER MORNING ROUTINE. School day.
TONSIL & ADENOID REMOVAL w/ BLIND TODDLER.
Просмотров 652Год назад
TONSIL & ADENOID REMOVAL w/ BLIND TODDLER.
COMMUNICATION BOARD, SPOON FEEDING: Special Needs, Blind Toddler.
Просмотров 908Год назад
COMMUNICATION BOARD, SPOON FEEDING: Special Needs, Blind Toddler.
BLIND TODDLER. Speech, Belt Cane & More.
Просмотров 859Год назад
BLIND TODDLER. Speech, Belt Cane & More.
BIO of a BLIND CHILD. JJ introducing himself to his teachers.
Просмотров 1,2 тыс.Год назад
BIO of a BLIND CHILD. JJ introducing himself to his teachers.
BLIND TODDLER BEDTIME ROUTINE. Special Needs Parenting
Просмотров 3,3 тыс.Год назад
BLIND TODDLER BEDTIME ROUTINE. Special Needs Parenting
HOSPITAL STAY with NONVERBAL, BLIND CHILD.
Просмотров 3 тыс.Год назад
HOSPITAL STAY with NONVERBAL, BLIND CHILD.
SPECIAL NEEDS PARENT Q&A. Blind Toddler. Part 2!
Просмотров 1,5 тыс.Год назад
SPECIAL NEEDS PARENT Q&A. Blind Toddler. Part 2!
BLIND BABY & the UNKOWN. Norrie Disease
Просмотров 2,5 тыс.Год назад
BLIND BABY & the UNKOWN. Norrie Disease
BLIND BABY Q&A - NORRIE DISEASE. Live, learn, educate.
Просмотров 1,2 тыс.Год назад
BLIND BABY Q&A - NORRIE DISEASE. Live, learn, educate.
ER VISIT & FITNESS TRIAL / ERROR. Balancing health & special needs, blind toddler parenting!
Просмотров 1,6 тыс.Год назад
ER VISIT & FITNESS TRIAL / ERROR. Balancing health & special needs, blind toddler parenting!
EYE PROSTHETIC, GLASS EYE, FAKE EYE. How it's made & how we use the prosthesis w/ our BLIND TODDLER
Просмотров 6 тыс.Год назад
EYE PROSTHETIC, GLASS EYE, FAKE EYE. How it's made & how we use the prosthesis w/ our BLIND TODDLER
MULTIPLE APPOINTMENTS WITH SICK, NONVERBAL CHILD. Why we were missing on Youtube. Special Needs.
Просмотров 1,7 тыс.Год назад
MULTIPLE APPOINTMENTS WITH SICK, NONVERBAL CHILD. Why we were missing on RUclips. Special Needs.
SPECTRUM OF NORRIE DISEASE. Similarities and difference between two blind toddlers with same disease
Просмотров 3,6 тыс.2 года назад
SPECTRUM OF NORRIE DISEASE. Similarities and difference between two blind toddlers with same disease
BLIND TODDLER JJ EXPLORES THE KITCHEN. Norrie Disease. Special Needs
Просмотров 7592 года назад
BLIND TODDLER JJ EXPLORES THE KITCHEN. Norrie Disease. Special Needs
NORRIE DISEASE. We've been missing on Youtube and TikTok. But why?
Просмотров 1,9 тыс.2 года назад
NORRIE DISEASE. We've been missing on RUclips and TikTok. But why?
BLIND TODDLER. JJ CELEBRATES HIS 2nd BIRTHDAY. Norrie Disease. Special Needs Parenting.
Просмотров 2,8 тыс.2 года назад
BLIND TODDLER. JJ CELEBRATES HIS 2nd BIRTHDAY. Norrie Disease. Special Needs Parenting.
BLIND TODDLER LEARNS HOW TO STAND WHILE IN THE POOL. Pediatric physical therapy.
Просмотров 9352 года назад
BLIND TODDLER LEARNS HOW TO STAND WHILE IN THE POOL. Pediatric physical therapy.
BLIND TODDLER JJ OPENS MUSIC BIRTHDAY CARD
Просмотров 6432 года назад
BLIND TODDLER JJ OPENS MUSIC BIRTHDAY CARD
ADVOCATING FOR SPECIAL NEEDS CHILD. What to do if the poop cocktail doesn't work. Blind toddler.
Просмотров 1,2 тыс.2 года назад
ADVOCATING FOR SPECIAL NEEDS CHILD. What to do if the poop cocktail doesn't work. Blind toddler.
I'm so happy to see that your family was able to enjoy this trip!❤
I’m so glad to hear you had a great time at Disney! It’s amazing to see how accommodating they are, especially from the perspective of an SEN family. I hope my son gets to experience it someday, but the flight feels a bit too long for us at the moment. My son is nearly 3 and a lot like Jenson-he has global developmental delay, is visually impaired, non-verbal, and is autistic. He’s also in the bitey, scratchy, pinchy stage right now. I really enjoy your content because I can relate to so much of what you share! He's getting a Toniebox for Christmas, you should seek a commission.
Thanks for sharing!!! I am so glad Jenson had a great time at Disney World!!! That was fun to watch!!! Look forward to your next video!!!!🙏🥰☀️🎄☀️🥰🙏
My heart feels so happy for the experience that your family had at DisneyWorld. We live a couple hours south of Orlando and have had so many wonderful memories there with our children and now our grandchildren. For your next trip look into the Cabins at Fort Wilderness. That is the most requested place to stay for my grandchildren. You have your own private cabin with full kitchen and so many wonderful activities on that property. We have stayed there multiple times without having the need to spent money on the parks and free transportation to other resorts. God bless you all, Merry Christmas and a blessed New Year❤️
Replay
Please keep these videos going. They are great. I’m a special needs mom & your videos are such an inspiration for me 😊
Jensen has changed so much and is walking really well
Thanks for sharing!!!! Loved the video!!!!! As always looking forward to the next one!!!!🙏🎄🥰🎄🙏
So fun! The room looks amazing!
Wow! Jensen is growing up beautifully and good on you to get some time for yourselves :)
Amazing! Well done
Happy boy❤❤❤
Awesome! Congrats little man!
Does he speak
It’s so great! Bravo!
So great! You guys are making such a great space for him to explore independently ☺️. Such a big step but a good one!
I like viewing the many creative ways you prepare Jensen’s space for him to explore and grow up in, every family member takes part to contribute. He’s a sweet little boy!
What a great room for that handsome boy❤ He was blessed to have such wonderful parents.
Such great ideas, it’s perfect for him! Love your videos, Jenson is a great kid. You are all blessed❤️
Amazing, Amazing, and Amazing!!! You and your husband did an awesome job on Jenson’s room!! It looks so cute!!! I know he loves it!!! Thanks for sharing!!!! Look forward to your next video!!!!🙏☀️🥰🙏☀️🥰🙏
He absolutely loves his room! We are so happy with the result all around!
Looks awesome
Thank you!!
أخيرا عدتم نحن فرحين بعودتكم🎉🎉🎉❤
اشتقت لرأيته❤❤❤❤❤اتمنى له التوفيق❤
Tonight, I came across a video of yours and I started watching other ones of your journey with Jensen. Thank you so much for posting all the things that come with having a special needs child. My little one is 9 months old and spent 2 months in the NICU. He currently has all the therapies, is tube fed, sees all the specialists, is delayed, has huge spit ups with horrible reflux, and has had a hard time gaining weight since coming home (stayed in the 1-2% percentile). I thought finally having him home would make things easier on me emotionally because leaving the NICU felt like we won a war. But coming home there have been more battles to fight and it’s been overwhelming recently. The video on your depression was played over and over and over because it was so soothing to me to have someone else express into words what I have been feeling. I’m currently mourning and choosing to distance myself from other families and friends with kids because of how different my experience has been. It is so hard but I realized that I might just be in the thick of hard right now. Jensen is a handsome boy and he has come a long way! I’m so happy to see how far it looks like you’ve also come. You work so hard and you all make a beautiful family ❤️much love sent your way. Thanks for being such a beautiful light to other moms 🥹 Happy Thanksgiving 🦃🍁
Oh my goodness mama! So beautifully written and means the world to me. This is my "why" I decided to document EVERYTHING, even the hard things. Our journey felt so isolating, I never want anyone to feel alone. There is SO much to learn when your journey isn't the one you imaged. That first year is the absolute hardest. You are still learning about your triggers while fighting the unknown of future "issues" for your peanut. I plan on another video covering mental health and where I am now. I think this is SO important. Eventually, I'll have one with how a medically complex child can affect marriage too. Many many hugs to you and your kind words. They truly mean the world to me! You are obviously doing all the right things in caring for your little and helping educate yourself, distancing yourself from triggers and understanding that you are never alone in this journey. Very happy first Thanksgiving to you and your little warrior!
You’re back ❤️
We are back! And happy to be here!
❤❤❤
I'm crying happy tears. It's so beautiful to see this precious little human experience the world. He's wonderful ❤️
Thank you! We were so grateful for the experience!
He's gotten so big!
it is amazing to look back and see how far he's come / how big he is now!
Amazing!!!! Jenson has come a long way!!! I am so happy he is doing well!!!!Have a wonderful and blessed Thanksgiving!!!!!🙏☀️🙏
Thank you! It's good to be back. Happy and safe holidays to you!
OMG Jensen has grown so much!! Welcome back!!
Looks like you guys are doing wonderful! Thank you so much for the update. He is an amazingly beautiful boy!
we are so happy to be back! Thanks for following!
Welcome back! I'm so glad❤. Jensen is one handsome dude. Look forward to more videos. Brenda From Maine
Amazing! Thank you so much for the love and support! We are so excited to be back!
Wow! Thanks for the awesome update!
I've missed Jenson sooooo much! It looks like he's doing awesome ❤
awww many hugs! We missed everyone too, truly!
So good to hear an update ❤
Love it when you mentioned Disney he clapped his hands.
I know! his timing was perfect!
Thanks for the update! He is so big! I’m glad school is working out🙂.
We are so thankful for school and that he loves it!
🙂He's almost doubled in size! It's so nice to hear an update and know that you're all doing great. 👍
Perfectly said!!! So happy all is going great with Jenson and your family!!!!🙏☀️🙏
So special! Thanks for sharing 🫶🏼
❤
Not being rude but very curious will little man ever be able to see is there any research done on this disease ??
Questions are welcomed. He won't ever be able to see. His form of blindness can not be reversed. He had multiple surgeries as a newborn but those were unsuccessful. Even if they were successful he probably wouldn't have kept his small amount of vision for very long. Since it is a rare disease there is not a lot of research on it. Thanks for asking!
Pumpkin patches are the best! Its so nostalgic.🎃
Definitely core memories!
How come he would gag to the corn? I hope thats not a rude question.
Not rude at all! Questions are welcomed. Not sure if I have a full answer though 😆 A lot of blind and visually impaired people can have tactile or texture issues, especially when it comes to food. Something just gives them that "ick" feeling. We are fortunate, the only thing JJ typically reacts this way is with dried corn, beans and lettuce. Great question
When you shell corn like that, there's always dust That flies up in the air when you move it around
@@LifewithNorrieDisease Thanks!
I’m really happy to see this and progress he has made. 😊🥰
awe, thank you so much. I was just thinking of you the other day. Hope you and your little are doing well!
Just checking up on you and praying that all is well.
So so sweet! We are good. Currently have 3 videos just about ready to be put out! Be on the lookout!
Don't make that baby gag just for a video
You caught me. Doing it for the views🙄😒… When actually I filmed every feature of the pumpkin patch to capture our experience. Just because he doesn’t like dried corn one year doesn’t mean he won’t like it the next year. Thanks for your concern though.
mind your own business! not everything is for views these days. she wanted to see if he would still gag the next year to catch memories not ur business!
@@KallieFales right! The reason I take part in social media is to spread awareness and help people normalize special needs. I actually had zero expectation on how my kiddo would respond to the corn. I was just enjoying our family time. Sad that it feels like you have to justify yourself for others. Thanks for having our back 💪🏼
@@LifewithNorrieDisease "gets him every time" let's me know that YOU KNOW your baby doesn't like it. Farming your disabled kid for views isn't right. You're welcome for my concern since nobody else seems to care 💕
@@KallieFales it's my business when it's posted publicly for the world to see. Why post if you don't want people to comment. They're hoping to make a pretty penny off of their child I'm just helping that along lmao
Hi JJ looking handsome. X
Thank you! I've done a lot of growing and can't wait for mom to stop being lazy and post more videos. Big squeezes (hugs). - Jensen
Aww, he is so cuteee
😮
What the world
He is blind , she tries to make him know to use this device that should help him walk and avoid obstacles