Oh bless her wow! Yes couldn't miss that. I love how your so calm its wonderful. You function very well on such little sleep. Amazing mother and Amazing little lady trooper
I'm so glad I found your channel. My son Jaxson is 7 and he has spastic quadriplegic Cerebral palsy ,and some of the things he does are similar to her. On his back he does the startled falling thing. Makes me feel like I'm not alone. I feel like I'm not doing certain things right with him,but we have allot of the same routines. THANK YOU for posting these vlogs.
This makes me thankful so many children and parents have struggles worse than we have. I am 76 but very healthy and a big part of my great grandchildren life one 4year has childhood apraxia of speech so has a lot of therapy but good health. Then her 1year brother has mosaic Down syndrome with pt She is very pretty your daughter and a good cuddles dont you love that. Our little guy will always be that way. I love your dolls big smiles. I will think of you guys in my prayers. Also Prayers for your strength I know what it is like to be a full time caregiver.
OMG, it’s such hard work. Parents of kids with complex medical needs should be applauded. I’d much rather learn about you than the Kardashians. It must take everything you have and more just to live day to day. You certainly have my admiration ❤
I understand your frustration re getting a child back to sleep. My daughter often had croup as a young child and so I spent hours with her in the bathroom with a steaming kettle singing nursery rhymes. After about an hour and a half she could breathe again so she’d go back to sleep in her bed. Two hours later we’d do it all again. Her record was to have 18 instances of croup in one winter. I hope you both had a good day.
Tova what about putting pillows behind her back so she can’t roll on her back herself? And then put her fairy lights with audio book or whatever and then you go, that way she may learn to settle herself. I was exactly the same when I was little!
Tried it a lot of times Danina. Sometimes she settles by herself but it's extremely rare. I use pillows behind her back but while it helps it doesn't stop her spasms.
I was going to suggest if a older childs swaddling situation for her arms would keep her feeling secure and lessen that brain injured triggered startle reflex so she lasts longer sleeping, but then I thought about Elin's personality in general and I could envision her having a bit of a meltdown over being restrained by a swaddle type wrap. Thank you for explaining her sleeping situation. I have Muscular Dystrophy and my O.T has recently mentioned a sleep system for me. Can you possibly do a video on Elin's sleep system? The set up, how washable it all is, how they picked what they did for Elin's needs, pro and cons etc?
Yeah, swaddling has never really worked for her... Erm, I don't have the whole sleep system, we don't use the whole of it. But I can do a video on what we use.
My daughter age 13 has severe epilepsy and autism, and has the worse tonic clonic seizures that she is struggling with right now. a rare form of epilepsy which cannot be cured is called Doose Syndrome and she has around 200 seizures a day. Sometimes she can stop breathing and she could even die from them she is on a ventilator that doesn’t even work she vomits around 100 times in her seizures but vomits blood. The doctors even told us she wouldn't have a chance to live, she can die from her seizures and she has almost died millions of times. She is always in the hospital and is never out, and I feel hopeless like I cannot do anything for her. She always wakes up hand locked and because of these seizures she is level 3 autism and cannot walk or talk or do anything basically. She was using the hospital showers when I was showering her when all of a sudden she suddenly fell so suddenly and I couldn’t help her in time and she is now in surgery because she has cracked open her head. I feel so hopeless. We have tried cannibas oil but it doesn’t help her, we have tried everything. I understand what your going through and I’m always here to talk. They cannot be controlled and we have tried everything and there is no other option but to euthanize her and to put her to rest and all her pain and suffering. It is a very hard option and it's for the greater good. 💜 Edit: She can sometimes have seizures for hours on end.
Do you have any pictures of ellin when she was a baby and newborn up until now I am medically disabled and mentally delayed and medically challenged I have a wheelchair and crutches and oxygen and a walker I am using my mother's wifi tablet for my messages I have carcinoma cancer and pancretitis and multiple medical issues and problems I have a therapy kitten 😺 named Wilson lynch
You have a very beautiful voice and I almost started to fall asleep
Oh bless her wow! Yes couldn't miss that. I love how your so calm its wonderful. You function very well on such little sleep. Amazing mother and Amazing little lady trooper
She is so very precious. God bless you and her.
You are such a wonderful mother. Blessings to you and your daughter & to your family . Amazing . She is so sweet.
You are such a wonderful mother Blessing to you and. Your daughter & to your family Amazing , she is so sweet,
I'm so glad I found your channel. My son Jaxson is 7 and he has spastic quadriplegic Cerebral palsy ,and some of the things he does are similar to her. On his back he does the startled falling thing. Makes me feel like I'm not alone. I feel like I'm not doing certain things right with him,but we have allot of the same routines. THANK YOU for posting these vlogs.
This makes me thankful so many children and parents have struggles worse than we have. I am 76 but very healthy and a big part of my great grandchildren life one 4year has childhood apraxia of speech so has a lot of therapy but good health. Then her 1year brother has mosaic Down syndrome with pt
She is very pretty your daughter and a good cuddles dont you love that. Our little guy will always be that way. I love your dolls big smiles. I will think of you guys in my prayers. Also Prayers for your strength I know what it is like to be a full time caregiver.
OMG, it’s such hard work. Parents of kids with complex medical needs should be applauded. I’d much rather learn about you than the Kardashians. It must take everything you have and more just to live day to day.
You certainly have my admiration ❤
She is a beautiful little girl I hate to see her having a seizure tho I hope that she feels better soon I'm praying for you beautiful queen
Oh bless her wow! Yes couldn’t miss that, I love how your so calm it’s wonderful You function very well on such little ,sleep, Amazi
Thanks Rhonda, there's no use working myself up over the seizures, everything goes better if I stay calm.
En så fin dotter du har.en otroligt vacker vlog bigg hugs too is bjudifull kids
She's so beautiful her smile makes me smile and happy
Thank you and I agree, her smile makes me happy too.
@@ParentXP you also beautiful
I understand your frustration re getting a child back to sleep. My daughter often had croup as a young child and so I spent hours with her in the bathroom with a steaming kettle singing nursery rhymes. After about an hour and a half she could breathe again so she’d go back to sleep in her bed. Two hours later we’d do it all again. Her record was to have 18 instances of croup in one winter. I hope you both had a good day.
Oh ouch! Yes, it can be so frustrating.
Выздоравливайте 😊❤
Помоги, Господи, болящим! Помилуй, Господи!
I love watching your TH-cam channel
What I don't understand is why kids this young are getting seizure of this severity like this.
Awe Elin your amazing you have the best mom I wonder if horse therapy could help you horse are one of the best medicine they help alot of people
Well, I'm scared of horses so I'm going to say no...
That's alright its ok to be scared of horses they are pretty big animals
It breaks my heart to see Elin have a seizure:(
It's rough, for sure!
Hello My Name Is Erin Scott and I had seizure before I know that stinks
she is so cute and her mom is the best
Aw, thank you
This is Emma I hope you get well soon
You are amazing
Tova what about putting pillows behind her back so she can’t roll on her back herself? And then put her fairy lights with audio book or whatever and then you go, that way she may learn to settle herself.
I was exactly the same when I was little!
Tried it a lot of times Danina. Sometimes she settles by herself but it's extremely rare. I use pillows behind her back but while it helps it doesn't stop her spasms.
I was going to suggest if a older childs swaddling situation for her arms would keep her feeling secure and lessen that brain injured triggered startle reflex so she lasts longer sleeping, but then I thought about Elin's personality in general and I could envision her having a bit of a meltdown over being restrained by a swaddle type wrap. Thank you for explaining her sleeping situation. I have Muscular Dystrophy and my O.T has recently mentioned a sleep system for me. Can you possibly do a video on Elin's sleep system? The set up, how washable it all is, how they picked what they did for Elin's needs, pro and cons etc?
Yeah, swaddling has never really worked for her... Erm, I don't have the whole sleep system, we don't use the whole of it. But I can do a video on what we use.
I love your singing voice tova
Thanks Alex
Does the weather effect her disability as cloudy rain thunderstorms?
Not that I've noticed apart from heatwaves trigger seizures. She likes rain though.
What kind of bib do you use Elin in all video? I have drooling problem can find anything big enough to catch all drool.
Two....count them two compression fractures in my spine. The more I listen to this woman the more I get pissed off.
Try putting captions on your videos as if she were talking
Sometimes I do
Awwwww 🥺🥺🥺🥺🥺🥺🥺😭😭😭🙏🙏
She's beautiful
My daughter age 13 has severe epilepsy and autism, and has the worse tonic clonic seizures that she is struggling with right now. a rare form of epilepsy which cannot be cured is called Doose Syndrome and she has around 200 seizures a day. Sometimes she can stop breathing and she could even die from them she is on a ventilator that doesn’t even work she vomits around 100 times in her seizures but vomits blood. The doctors even told us she wouldn't have a chance to live, she can die from her seizures and she has almost died millions of times. She is always in the hospital and is never out, and I feel hopeless like I cannot do anything for her. She always wakes up hand locked and because of these seizures she is level 3 autism and cannot walk or talk or do anything basically. She was using the hospital showers when I was showering her when all of a sudden she suddenly fell so suddenly and I couldn’t help her in time and she is now in surgery because she has cracked open her head. I feel so hopeless. We have tried cannibas oil but it doesn’t help her, we have tried everything. I understand what your going through and I’m always here to talk. They cannot be controlled and we have tried everything and there is no other option but to euthanize her and to put her to rest and all her pain and suffering. It is a very hard option and it's for the greater good. 💜
Edit: She can sometimes have seizures for hours on end.
Do you have any pictures of ellin when she was a baby and newborn up until now I am medically disabled and mentally delayed and medically challenged I have a wheelchair and crutches and oxygen and a walker I am using my mother's wifi tablet for my messages I have carcinoma cancer and pancretitis and multiple medical issues and problems I have a therapy kitten 😺 named Wilson lynch
Is it her first seizure or how long she had those?
She has a history of these seizures. I don't know how long she's had them but I would guess her whole life. Cerebral palsy isn't fun.
@@hopingyousee9489 No Cerebral Palsy is no fun, I myself have mild Cerebral Palsy in both legs. And I am deaf as well too.
@@christinegombas7490 My name is Melony Adams
I live in Alaska
Kemderon Hall kaledidosope Shropshire
😭😭😭😭😭
Kemderon Hall kaledidosope
Tova what about putting pillows behind her back so she can’t roll on her back herself? And then put her fairy. lights with Audi on audio Read. more
She can roll backwards, even with pillows behind her back 😂