MY DAUGHTER’S BRAIN INJURY | How HIE Affects My Baby - Cerebral Palsy, Dystonia & Development
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- เผยแพร่เมื่อ 22 พ.ย. 2022
- Welcome to another special needs family vlog. In this video I am sharing an insight on my daughter’s brain injury and how HIE affects her day to day life. My daughter, Avery is 20 months old and has evolving Cerebral Palsy and Dystonia, among other conditions.
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As an RN I am very excited about all of the updates about Avery. Especially the prophylactic antibiotics 3 times a week and the standing admission orders. It’s a wonderful idea to keep her care streamed lined and consistent. She definitely needs a GI referral and the J-tube seems like an excellent option as well. I know it’s overwhelming but am so excited that plans are in place for her to see what’s going on.
I’m glad you think so. I’ve learnt that so many different professionals have different opinions so I like to get as many as possible to get a bigger picture. Hopefully we’re on the right track to making life a little easier for Avery ❤️
Ur so sweet to leave an uplifting reassuring comment!!! ❤️
She is soooooo cute😍 looks to me like she was trying to interact with the camera/screen. What a sweetie🥺
I realized that a lot of the involuntary movements(that we don’t like) are caused by the baby trying to move/communicate. Try to understand what she’s trying to do vs stop her movements altogether.
I stay this from experience with my daughter. After looking back at old videos I realized what she was trying to do but all I was focused on at the time was controlling the awkward moments she was doing🥺 it can be scary and frightening I know. Even tho they don’t move like us they’re still babies trying all their might to play😌
You’re totally right that’s what a lot of everything to do with Avery is like, it’s a catch 22 and you have to try to find the happy medium xx
I always look forward to an update and any of your videos. You are a really great mama and Avery is such a beautiful little gift. I love how you meet challenges like a warrior and will battle giants for your children. Keep going. You inspire us all.
Thank you so much thats very kind ❤️ I appreciate it 🥰
Please look into SELECTIVE DORSAL RHIZOTOMY procedure - I watch Nikole Lilly's youtube channel, and her daughter, Kenndal, has spastic CP as well, and she went through the botox shots and baclofen scripts, they thought about a pump as well. And then her and doctors decided this procedure was best for her, to help with her tight muscles.
She just had the surgery and she's doing awesome!! Anyway, not a dr, but figured I'd mention it bc it has worked so well for them 🥰
Thank you ❤️ I really appreciate you taking the time to share.. Avery’s neurologist seems to think the majority of Avery’s tone is actually her dystonia, as she does loosen a little when she’s completely relaxed (which isn’t often). I will make a note of this and bring it up at our next appointment xx
I also have cerebral palsy I been watching your videos your doing a good job with Avery
Thank you I’m glad you think so it means a lot ❤️ I hope you’re managing with your CP well xx
An excellent overview into the complexities of managing the many aspects of conditions affecting Precious Avery. Your independent research & learning from all involved professionals ensures you are the best advocate on her behalf. Above all the critical clinical aspects of care is the abundance of shining love & resilience in you & your family. You are so very inspiring! Thanks kindly for sharing. ❤️🇨🇦
Thank you so much 🥰❤️
Avery’s hair is so thick, long and gorgeous!!! Her smile melts my heart.
I know I love her hair 🥰 me too xx
She’s just tooo sweet she’s gorgeous 💕💕💕 my daughter is a similar age she would love Avery ! But we are in Australia 🤦♀️
Thank you so much ❤️ I do have family in Australia xx
God Bless your Beautiful baby girl, you are a wonderful mother and Avery will grow into a very loved and adorable little girl x
Thank you ❤️ she certainly will xx
I just found your channel and I love it and baby Avery! Just precious 💕
Thank you so much ❤️
I am praying for you guys. I have cerebral palsy as well, but mine is a very mild case. I am on baclofen as well, and it seems to help. I really do love your videos.
I appreciate your prayers ❤️ I’m glad you’re only mildly affected that’s amazing xx
Avery is so beautiful! My son has hypertonic quad CP. He learned to swallow, sit up, crawl, and walk through much therapy. Hippotherapy helped him make his first steps on his own. He is now 23 learning to drive and working as a receptionist. You are amazing! The journey is difficult, but the joys over small gains are overwhelmingly beautiful. With your amazing care, Avery will thrive!
I’ve not heard of that therapy before. That’s incredible that he’s doing so well, and such a credit to you because these early days are so hard. Thank you so much ❤️
Honestly I can’t believe how amazing you are as a Mum. Avery is so gorgeous and will look very cute in her glasses. I’m so glad she has you for her Mummy 💕💖💗x
Thank you so much I appreciate that ❤️❤️
Avery its getting moore gorgeous as she grows. You are an AMAZING MOM, and i really enjoy learning more about Averys health. I cant wait to see Avery with her new glasses. Happy Thanksgiving from Utah🥰❤❤
Thank you ❤️ you’ll be seeing them very soon 😍 xx
Thanks for the very informative video!!! It was so enjoyable watching the fireworks!!! I know that was a lot of fun!! As always I love your channel and look forward to your next video!!!!!🙏🔆✨✨🔆🙏
Thank you so much I appreciate it and I’m glad you’re enjoying our videos 🥰
So happy you guys are on the mend and just in time for the holidays! Avery is really trying to get her words out one way or another. Lol Have a Happy Thanksgiving Family! 🦃🏠🥰🥧👏👏
Thank you ❤️ it does seem that way I definitely think she will communicate somehow ❤️❤️
I love your videos, I love to see all your family, persuade Josh to join in would be lovely to meet him.
Thank you ❤️ haha, I tend to catch him in the background of my videos but he was home from work for a couple of weeks so I do catch a little more of him in the next few vlogs xx
Such a strong mummy 💪 😘
Thank you ❤️
awww how sweet Avery's big smiles, she loves her family time too. You are the best mom, thanks for sharing. 💕💕💕💕
Thank you so much ❤️❤️
Avery is so beautiful I love watching ur videos and I think when she gets her glasses she will look great in glasses u do a beautiful job with allllll ur kids,ur very strong I'm also a mom of 3 ...same as you 2 boys and a girl...only my girl is the oldest and then I have twins boys...they are all teenagers my daughter aaliyah is 15 and my twins are 13.
Thank you so much ❤️ I’m glad you enjoy our videos. How lovely, I hear they only get more of a handful when they hit the teenage years 😂 xx
She looks like a little doll
She does doesn’t she 🥰
Happy 20month birthday to you Avrey
Thank you.. I’ve not done stem cell research. I’m not too sure if it’s available in the UK with the NHS xx
She has a beautiful smile❤️❤️❤️
Thank you ❤️
Solo quisiera entender todo lo q estas disiendo pero por los comentarios q los puedo traducir y leer see que es muy bueno todo lo q díses tengo una niña con parálisis es muy linda y la tuya también es presiosa y como mamá especial nos encanta ver a otra mamá especial. Saludos ❤ q Dios te bendiga.
Prayers to your little one ❤️❤️
Get well soon dear greetings from Germany
Thank you ❤️
Love y’all bunches 💙💖💙💙💖
❤️❤️❤️
Sorry that the blended diet didn't work, but hopefully you'll get a chance to try again in the future. You are doing a wonderful job! Keep it up!
Hopefully we might, it’s all just what’s best for Avery at the time ❤️
Hey you daughter is ok you look pretty you are the best vlog on TH-cam you have a nice day
Thank you so much you’re very sweet ❤️
She is such a beautiful elegant baby. I hope more help for her disabilities come soon.
Thank you ❤️❤️
How did the pie turn out? Respectful question, when she cry’s out… is she in pain from the spasms or just her version of “ talking “? She’s going to look precious in the glasses. They always do!
It was lovely but I’m not going to lie last years was better 😂 maybe you can’t cheat on the pastry. It could be either.. most of the time I think she’s just experimenting with her voice, you can tell if she’s in pain from a spasm xx
You can’t bet a nice warm hot chocolate especially on a cold winter night yum 😋 yum 😋 awww Avery face watching the Fireworks was just something else so adorable 🥰 she probably loved it seeing all the different colours and the different sounds bless her loved your Guy Fawkes he was amazing 🤩
Don’t worry about using ready-made pastry I do and even Jamie Oliver dose I used to make it but now I buy it lol just easier
Omg you pumpkin 🎃 pie 🥧 looked absolutely delicious your such a amazing cook you need your own cooking book
Avery is one in a million she such amazing loving caring caring gorgeous little girl 8 can’t imagine Avery not bring Avery she such a little character
It is worrying at times and even scary but she has the best care
Love 💕 you guys so much love Wednesdays and Saturdays knowing it the day of your vlogs but if you ever need a break you take it
Hope your all well ❤❤❤❤❤
Thank you you’re very sweet and I appreciate your continued support ❤️ I don’t think I’d qualify to make a cook book I just steal recipes from other people. Jamie Oliver is usually my go to to Christmas recipes 😋 Avery has been doing so much better this last week, you’ll see in upcoming vlogs but she’s so much happier and her glasses have made a huge difference. She has a new play gym too that’s been great for her. We’re having a good run at the moment I just hope it lasts 🤞🏼 xx
What a beautiful, girl!
Thank you 🥰
MY DAUGHTER’S BRAIN INJURY | How HIE Affects My Baby - Cerebral Palsy, Dystonia & Development from celeste roberts
Mem please tell me how do you feed your baby.me too have baby suppering from HIE.he is unavailable to such even bottle milk.please reply.
Avery is fully g tube fed at the moment xx
Thank you so much ma'am for replying me.god bless your child.
I my self dont like the botox because i have been reading about the botox on google and the botox is not good in the long run for kids and baby s then i thnk stemcells is much better then botox are i have allso been reading about stemcells there are stemcells kliniks inThailand and in Mexico i have allso been loopings at youtube about stemcells for thouse WHO are haveing ceberalpalsy i think there is stemcells klinik in London i have just looked on google