Noah Will End Up In A Wheelchair
Noah is autistic but he also has hypotonia which is low muscle tone. He has been in pain for months along with his joints …
source
Similar Posts
Tyler Mark: Hemp Economics
Byadmin
Tyler Mark, associate professor of production economics, University of Kentucky Cornell University/USDA-ARS National Hemp … source
Creating a Powerful Content Strategy to Fuel Your Business Growth Online
Byadmin
Try SE Ranking for free: A sustainable approach to content … source
Episode 14: Entrepreneurship with special guest Michael Bloom
Byadmin
In depth discussion about entrepreneurship and building a small business. Special Guest Michael Bloom. source
WIDOWMAKER (6 in 1) DAB !!!!!!!!!!
Byadmin
Huge bowls with 6 different waxes !!!!! let’s go. source
Australia, Brisbane. Botanical Gardens through CBD. March through streets. 21 August 2021.
Byadmin
Peace. Love and respect for all views/ opinions. #shorts #protests #australia Reporting on the ground much larger and more peaceful turnout than what was … source
Noah does not have EDS, this is something we have explored and asked doctors about. The only thing he does have is explained by his low muscle tone. Everything that is going on is due to his 3 chromosomal abnormalities. This is why in the video I asked for others not to give medical advice. Noah is under the care of a team of therapists, doctors, and specialists who are giving him the BEST treatment possible and we have explored every avenue. I understand how easy it is to be like "well this kind of sounds like what I have" and want to push that narrative but for us, that is not the case. And even if it was EDS, it wouldn't change his treatment plan.
Please understand how stressful and hard it is to have all of these new things being thrown at you as a parent then sharing it with social media then having so many people suggest it's that or this instead of leaving it to the trained medical professionals. I am sharing this because it's a part of our story and to raise awareness. We have the medical treatment covered by doctors and hospitals who are ranked best in the nation.
Also I have what is called genu Valium and that actually made me prone to tearing ligaments (dang dr google lol) and had semi major knee surgery on my left knee where they replaced my cal ligament with a cadaver and repaired my meniscus. I screwed up my knee by not frequently doing PT stretches I was given and now I’m reliant on ibuprofen and CBD rub. 🙁
I had walking issues when I was a baby and still do after knee surgery from when I was 17 and now I try to go to the gym to work off my extra fat that I’ve gained and can’t do so because my knee just doesn’t like it. Do you have anything to suggest? I hope Noah benefits from the PT and the treatments the docs have him on ❤️
My son was a toe walker from when he started walking until he was 4. It didn’t stop. We opted for Achilles heal lengthening surgery instead of serial casting. It was done bilateral so we wouldn’t go in twice. I know your sons situation is different but know that you are doing your best and he has amazing parents! Hugs
I hope everything you’re doing will work super well for everyone involved. CBD oil helps with my severe chronic pain condition but it makes me very lazy which would be counterproductive for Noah, though it might really help his acting out
I am so sorry Stephanie, Noah is such a golden child. I was always happy to see him talking and going. This is heart breaking. Stay strong, I know you have been all this while.
Not being rude but how did you end up with all your children having medical problems
You and your family should do an interview with Special Books by Special Kids. I think it would be really informative.
First off I think you're doing a great job. It's not your fault for not knowing everything. The doctors you saw should have recommended pt. Though sadly it may not be uncommon that this happens. I had a partner who had low muscle tone due to cerebral palsy who was told in their local hospital, probably around Noah's age that they didn't need pt. I guess because they appeared to the doctors to function fairly "normally" and now they struggle significantly with pain and moter control as an adult.
It may be rough to know Noah is going to need a wheelchair, but the fact that he's getting access to one is good. I am disabled and I've been spending years trying to get some kind of diagnosis, it's most likely POTS and EDS in my case. I've had symptoms since probably before I was 10, when I was younger it didn't interfere much, as I got older the unaddressed problems got worse. Last year I stopped waiting on the system for help and just gave myself permission to by a cane, crutches and compression socks. These tools allowed me to excersize more and with less pain, in turn my muscles have strengthened and my body is a bit better at keeping blood flowing to my brain. This makes for more days where I can walk without a mobility aid, and more physical resources to do things I was in too much pain for before, like skateboarding. I used to be scared of needing a wheelchair, but now I'm ready to go back to school, and look for jobs on a film set I know I won't be able to endure long days without a chair. Now the idea of getting a chair is an exciting one, a key that unlocks doors I couldn't before.
Chronic pain and disability are gonna suck often and hard. But the more tools Noah is able to use to shape the world around him to fit his needs the easier it'll get to live a life that is fullfilling and joyful, even if it's also painful.
Does Noah have nerve (neuropathic) pain?
you are an amazing mom.
Doesn't that make him cry?
Appointments can be so hard, I know with my youngest he really doesn't enjoy doing anything that he doesn't like even if it's good for him. We try to be positive and encouraging and try hard not to overwhelm him. But therapy's always want more appointments and we have to be limited or he will be reluctant and Moody the whole time and not do as they want him to do. Just keep trying and doing what's good for ur family Doll 🥰
Wow, that is so helpful
I got a surgery in both of my knees to basically strap down my knee cap. A ligament is attached to the inside of my knee cap and it is strapped to my thigh basically. It has done miracles.
I haven’t had heel stretching but basically they go in a clip the tendon and cast it. So that the tendon heals longer. At least that is one way to do it.
Are u still taking blood pressure pills? For how long u took pills after delivery?@ our Landing crew
First time here but my is this a great and supportive community ❤️❤️❤️
Great work with your exercises Noah, I do similar exercises.
I use a wheelchair everyday and i find that it has made my life easier.
Is this almost like a form of muscular dystrophy? Or they really don’t have a term for it because it is associated with his chromosomal differences? It sounds like you have a lot of great plans in action to help him. Sending good thoughts!
Love his red hair(red hair in my family).
I walked in my toes, STILL.walk on my toes at old age, Ortho Guy said tight tendons, I have tight tendons just about everywhere.
Have u look into EDS Ehlers danlos syndrome
Look into Alinker, too. It is a mobility device helping to stay upright and still be able to have pain relieve. It helps with giving the body stability and stay mobile and on eye level with the world. Sitting in a wheelchair might be pushed a bit into the future with it.
And the inventor has fundraiser possibilities in America and other countries, if families cannot afford the price. I am a fan of this, even though I can not get one due to the german system for people on benefits. But still want everyone who might profit from it to learn about it.
I take Diclofenac sodium
I am 44 years old and autistic I have some of the same problem Noah ass I have hypertonia gout and arthritis which causes me pain daily
That is so awful that they didn't tell you at the same time as diagnosis that he would need PT. It's not your fault. They didn't do their job correctly.
In UK. my son was born with low tone. Nothing terrible was found as to why, hyper mobility just runs in family. They started PT straight away. He was only 2 years old and the Physio used to home visit once a week and I had to do his exercises with him every day. She tried to make it fun. He had to wear Orthopaedic boots to be able to walk. She said to avoid, dance, gymnastics and always focus on strength of muscles to protect his joints. We now live in France and at 6 years old he started with a super specialist who makes special inserts for his shoes custom made for his needs. He is now 19 years old and still sees this specialist Podologue 13 years later. Now at Uni and plays Table Tennis at competition level for our local team.
We also had help education wise with various specialist teachers as he has Dyslexia, Dyscalculie and now possibly ADHD. We have been so fortunate to receive all this help. The French health care system is the best in Europe. We have been so fortunate. You are a great Mom. Don't beat yourself up. And by the way CBD Is very good. I use it to supplement my pain relief meds from my doctor. You will need to try different doses and products till you find the one that works best. I use little tablets that you suck kinda lemon flavoured which contain CBD and CBG, which is good for muscle pain. CBD doesn't taste very nice, but well worth a try. God Bless you and your family. 🙏
As a parent, I can and cannot imagine what all of this means to all of you. I was given a very poor prognosis as a child, including numerous diagnoses similar to Noah. I've defied every odd, prediction and stat imaginable. My plan did not always align with conventional medical 'wisdom'. Everyone is different, and in medicine, there are no certain outcomes. So much is a marathon, and not a sprint. Sometimes, there are answers, or they are not always the ones that you need, nor want. Just sending you good vibes, and hope that these quality of life measures are a bridge to something better being available in the longer-term. There's a lot of resources and expertise for pediatrics, but far less so for adults, especially as they age.
I have high tone, this is referred to as spasticity. There was not much information about aging with that when I was young which is why I do my videos now.
I’m glad you’re doing your videos for the people that need them having high tone in some areas and low tone in others As I do can cause the same type of issues with your back. And also all the parts of your body.
I HAVE DONE TOE WALKING UP UNTIL I GOT HURT BY A DRUNK DRIVER AT THE AGE OF 21 AND NOW I'M 57 I USE A WHEELCHAIR
Awe man. Sure hate to hear that.
Darling dont beat your self up rember Noah was your first special needs child so it was all new to you then . Now with Nellie you understand what you are entitled to.xxxx
I have intellectual I disability was also I was delayed
This video came right on time …wow confirmation we are doing the right thing for our son Jorryn he is Autistic and a constant toe walker…he is getting braces today….praying for your strength and your family….sending hugs and blessings..I have followed your family for years even before Jorryn was convinced..We live in Jacksonville fl..MD considering moving too..You inspire me so much. KEEP PUSHING YOU ARE THE BEST
At 16 years old my grandmother son was told to get a wheelchair because his juvenile arthritis would eventually make him disabled. His battle has been long and hard, but he still can walk. He walks with his shoulder up and his neck down but by the grace of God he still walks!!
You just got to remember that being in the wheelchair isn't the end of the world at least that's how I feel because I'm in one I have been my entire life just wanted to encourage you a little bit
Noah is just so sweet. Watching him doing physio with his dad's help was very moving. This video is an eye opener for me. I have 10 year old twin boys, Eric and Lister. Eric is autistic and gifted (his main challenge is social skills, big time. He can kill you in Chess but can't have a two – way conversation with you). Lister is neurotypical
I’m an ambulatory wheelchair user and before deciding to start using a mobility aid I experienced a lot of grief for the life I imagine for myself, but by the time I decided to start using a wheelchair I was extremely happy to actually receive my chair. It felt like freedom being able to do things I used to enjoy like going shopping without being in as much pain and getting so fatigued. It can be really hard to make the transition into a wheelchair but if you can focus on all the things that Noah will be able to do with a wheelchair he couldn’t do before it feels very joyful. ( I actually compare getting my wheelchair to the feeling of getting my driver’s license) hopefully this was helpful sending positive energy to your family 💛
Stephanie, you are so right. The doctors assume you know, and don’t explain what their options are. I am so glad that you are sharing your story even though it’s tough. I hope there will be one or two things (excercises or activities) that Noah would enjoy and do more willingly….
💖
Praying for you, Noah and your family
Prayers for your son and you.🙏🙏🙏🙏🙏
This is devastating and so so hard ❤ I am really sorry. I am praying tonight that Jesus covers all of this with His Grace and Mercy. I'm praying this situation turns out better than anything you can imagine and that if not , you have the peace and strength to endure it with as much joy as possible. You are a wonderful mother and family ❤
I agree, the system can suck, nationwide. Mine is almost 31, and he's now suffering a hip problem, with constant pain. My bubs had st, ot, and pt as a toddler, he's always been a toe walker (orthotics didn't help), then graduated early intervention to go to special needs preschool, but when we left the school system, help was limited. I feel for you; just knowing when your kiddo is in constant pain is so hard.
I thought I heard Noah mention getting a pokemon (sounded like he said Rapidash). I play Pokemon Go; yes, even old folks play it. It's great for motivation to get out and around.
I wish Noah the best. Yay, watermelon wine.
You are an amazing woman and mother, never ever think you have done anything wrong when it comes to your children. I know you are so busy concentrating on you most wonderful children, I hope you yourself is getting help for yourself. It is often hard to remember talking to someone yourself who doesn't really know you or your family. This is my first time seeing your channel. But I know you live here in the North of North America. So you have lots of available options for you. Lot of life for you and your family.