BLIND BABY: Typical Saturday w/ a vision impaired toddler!
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- เผยแพร่เมื่อ 30 ก.ย. 2024
- Parenthood is challenging, but also rewarding. As hard as you try to keep a schedule toddlers usually find a way around it. This is just a day in the life with trying to keep my visually impaired, special needs son busy throughout the day. Norrie Disease.
Cute little tater tot! Happy Mother’s Day! Your doing an excellent job with Jensen❤️💪🏼❤️
thank you so much! Same to you!
Guess there's already a pet.
He might benefit from having a pet to interact with.
Unfortunately the dogs don't do much with him and he doesn't understand that they are there. However, recently the dachshund has been licking his hand during meal time and JJ has been holding still and accepting the interaction. So I'm sure they will be buddies at some point, just going to take a little more time then most kiddos.
Adorable little angel ❤
Thank you for your kindness 🥰
May I ask what his sleeping cycle is like? Does Jensen sleeps throughout the night? Whats your trick? *tears*
Of course, please never hesitate to ask me anything! Jensen does fabulous with sleeping at night. He generally sleeps from 5 or 6pm to 4 or 5am. We have tried to get him to go to bed later but he is typically ready earlier in the evening. His naps are hit or miss. We try to get him to take 2 small naps or 1 long one. But he is usually eager to have an early morning nap.
So basically I have no advice on his naps because I'm still trying to figure that out. However, with bed time we consistently do the same small routine. Right before we put him down we give him an 8oz bottle of milk. As soon as he is done we put him in the crib. (We prep his room before this by using a sound machine with "white noise"). He sometimes plays in his room for an hour before going to sleep, but we generally leave him alone, until he falls asleep.
The doctors think he must have some small amount of light perception since his body seems to do well with sleeping through the night. I'm not sure how much your peanut can or can not see, but I have heard that a pink or red nightlight helps release melatonin in the brain which helps with sleep cycles.
@@LifewithNorrieDisease
I am impressed and jealous all at the same time. Girl, my husband and I have tried almost every thing under sun and he’s 1+ now. We’ve close to just accepting that this is it and there’s nothing we can do about it. I believe he has no light perception though because he doesn’t even react to the sunlight which is a harsher light.
The only thing I can say is he has been consistent with being inconsistent 😅🥴
Today he went to bed around 2am… woke up for a feed at 5am. Slept until 1pm and he went for a nap at 4pm. In short Tyler sleeps when HE wants to sleep 💁🏽♀️😅 and his sleep cycle affect his diet because he will only eat when he wants to.
But enough of me rambling lol I will try that red/pink light thing and see if that will help
@@chanelwilson4249 oh man. I definitely do feel blessed with our circumstances. I do know that if and when they are completely blind that the brain has trouble with distinguishing night and day. I'm not sure what kind of doctors you may have for him when it comes to Norrie, but I have heard of people having to take medication / melatonin to help regulate a sleep cycle. Have you looked into that at all? Otherwise I will ask around / ask our eye doctor when we see him in a couple weeks!
@@LifewithNorrieDisease I have thought of and suggested giving melatonin to Tyler to his doctors but they’re concerned about giving him at a young age… but truth be told with the best efforts of Tyler’s pediatrician and Ophthamologist there’s so much they can do and no more because Tyler’s condition is out of there scope. And they are one of the best doctors…. We are considering migrating though so hopefully in the near future he can get the help he needs
@@chanelwilson4249 eek, I’m sorry to hear that. We have an eye appointment coming up and though this eye doctor doesn’t specialize in Norrie disease ill be sure to ask if he knows any tricks for sleep and vision impaired kiddos
Does have other issues besides blindness?
He's delayed and lower tone. His disease is usually accompanied by hearing loss at some point as well as vascular issues.