BATTLING DYSTONIA - What Happens When My Disabled Daughter Gets Sick | MORNING ROUTINE/Tube Fed Baby
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- čas přidán 27. 08. 2024
- My daughter's dystonia is challenging for all of us, especially Avery, but when Avery gets sick, dystonic movements can completely take over.
This is a realistic and raw morning vlog, I even debated throwing the towel in and just trying to film another day, but then I realised, 'this is my reality'. The whole point of creating this platform was to share how rewarding AND how challenging life can be raising a baby with complex medical needs.
Avery has a hypoxic brain injury, cerebral palsy, dystonia and she is 100% reliant on being tube fed. So our mornings can be incredibly chaotic and stressful, but also gratifying and fulfilling. Her illnesses are frequent, so we get many days like this, and thats ok, because I know we also get amazing days where she is full of smiles and joy. Each and every day with her is a blessing, and 1000% worth the harder times.
COME SAY HI
WEBSITE - mummyandavery.com
INSTAGRAM - / mummyandavery
DISCLAIMER
I am NOT a medical professional, nor am I professionally trained in any of the equipment shown in my videos.
I am simply sharing my own experiences and opinions.
Please do not mistake what I say in videos for medical advice or training.
If you have any medical concerns, please see a Doctor :)
PRODUCTS I COULDN'T DO WITHOUT (UK only sorry!)
(Affiliate links, I may make a small commission from your purchase, however these are products I use and love!!)
Avery's Car Tablet Holder - amzn.to/3Ozf8Se
Avery's Baby Carrier - amzn.to/3nqFR7j
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God bless you sweetie..... God sure knew what He was doing when He chose you to be Avery's mom. You are truly a blessing for her 💕
Thank you so much that means a lot ❤️
Your god is cruel to inflict that on them
@@mummyandavery - sweet spending time together. How old is she?
Will she be able to be verbal?
She is so sweet - I would love to hold and snuggle with her.
You are such a lovable mom. Keep up the hard good.
Blessings.
Ooppss - forgot the word WORK - your good hard works.
I would love to tell you a bit of advice without upsetting you. Since I’m an adult that has lived with Myoclonus and Dystonia all my life and I can voice how I feel… Movement, like from a bouncer or bouncing her, feels terrible to someone with Dystonia. It triggers a very tense sensation in my body every time something moves under me etc… For example, a spring mattress reverberates, so it triggers my Dystonia. I only say this because those who don’t have Dystonia would not know that ❤️ Also any pressure put on me when I’m really spastic is uncomfortable. I always make sure that my body is free to move how my body wants.
So nice to hear from someone with dystonia that can describe the feeling and thank you for your feedback. Avery’s response is always a happy one when bounced and it’s the only thing that can calm her, I guess that goes to show it can affect people in so many different ways ❤️
So nice to hear from someone else with it. The bouncing while feeding can be really unsettling on the stomach too. Teething is so awful for bubbas. She is just such a sweety pie. Does Panadol help for teething? You’re doing an amazing job mumma. It’s hard work. 🙌
Thank you so much ❤️ I’ve not heard of that medicine.. we use bonjela teething gel when she will let us xx
@@mummyandavery A Chamomile decoction (very strong tea) is a safe option for babies as well. Swabbed over the gums, it provides some relief from oral pain. I used it when I had orthodontics in.
Everyone's different no matter what disability you might have what might feel good to you or feel bad to you may not feel good or bad to the next person she would absolutely let you know if she was not happy. Keep up the good work you're doing a great job! I raised two boys both mentally disabled and I know there were days you just want to throw your hands up and just give up. Every now and then a really good cry just gets all of that tension out and then I'll feel much better afterwards LOL it's hard it's very hard and some days you don't know how you're going to make it through you just do & by the grace of God go through it and come out the other end. You may not be in one piece at the end but at least you get through it LOL my sons are 36 and 29 now I'm disabled because of degenerative spine disease I can barely stand for 5 minutes. I'm too afraid to have the spine surgery but anyway, my 36 year old son came over today with a friend of his and said Mom I'm going to clean the house for you!!! If there's one thing on older self would say to my younger self is stop worrying stop stressing Don't panic everything's going to be okay. Even when you think it's not going to be okay trust me it's going to be okay.
Avery is absolutely stunning. She has such natural beauty. Beautiful, sweet kids.
She does indeed, I think I have a very beautiful bunch but then I am biased 😜❤️
I'm a 56 year old female that was diagnosed with generalized Dystonia at age 6. I've been on a low dose of sinemet for over 30 years. For me my symptoms are worse when lying down and or sitting for long periods of time..Once I start moving/ walking my body/ muscles relax.
I wish the best for your little one, hopefully as she gets older she can communicate with you better what makes her feel better .
Wishing you all the best.
Nina
Thank you for sharing, I like hearing about real experiences ❤️
You are a Wonderful Mother!! People could take Lessons from you!! May God Bless you and your Family in a very Big way!! Avery is a Beautiful Baby Girl!!
Thank you that’s so sweet ❤️
@@mummyandavery You're welcome
She did so well on tummy time! She looked up at you and maintained that for several seconds! Way to go, Avery!! When you were reading to her and changed the tone of your voice, she smiled and cooed. She loves her mummy’s voice!!
I’ll be honest it’s been really lovely having the footage because there’s things I don’t normally see because I usually need to be behind her to support her. What you’ve said is so nice to hear considering how grumpy she was this day ❤️
She is such a beautiful, little angel. And you're such a good mom!
Thank you ❤️
Your daughter is gorgeous! She seems very aware of her surroundings.
Thank you ❤️ yes she’s very inquisitive 😊 xx
Wow, you’re absolutely incredible. Watching this video has blown me away, you genuinely are doing a fantastic job with all of your beautiful children!! (Not to forget dad too, as I’m sure he’s equally as amazing)
They are so so lucky to have such an incredible mummy xxx
Thank you so much ❤️ yes Dad is amazing he’s just camera shy ☺️ xx
You are a great mom!! Hang in there! I subscribed as I just found you today 🤗❤️
Thank you 😊 ❤️
I have had Myoclonus with Dystonia since birth.
Praying for y’all 🙏🏼🙏🏼🙏🏼
Welcome, I hope you’re managing well ❤️
Avery is such an adorable little girl, her smile must brighten up your day.
Everyday 😊❤️
She is a beautiful baby girl 💗 hugs to you all!
Thank you 🥰
Blessings to you, Avery, and your family!😊🙏🏼
Thank you, and to you ❤️
How sweet , love seeing Avery smiling and laughing at her book and mobile .💖💖
Now we know where Avery got her beauty from! God be with you and your family...you're all loved more than you could ever imagine. Avery seems to be thriving in this environment that you've made for her. I'm smitten...and I've subscribed. Cheers from the Ozarks USA!
Aww thank you so much you’re so sweet ❤️
SHE IS A GREAT MOM. LUCKY BABY!
Thank you so much 😊 ❤️
Avery is so cute! I myself is 52 yrs old profound deaf and I also have mild Cerebral Palsy in both legs since birth.
Yes I 100% agree she is cute 😂 Thank you for your comment, before Avery’s event I never realised just how many people live with cerebral palsy.
@@mummyandavery I am the only one have Cerebral Palsy. Not know if anyone have same condition I have in my local area.
I found a few people in my area on a Facebook support group that had members from all over the world. It’s amazing how powerful social media can be in terms of support and finding others that understand what you’re going through. That’s exactly why I wanted to start this channel and I’m so glad you reached out.
You do a wonderful job taking care of avery. Make sure you take care of you too 💕 you can’t pour from an empty cup. caregiver burn out is real, counselling is a great tool to use to have someone you can share this experience with in a non judgmental environment. You are a great mom 💕💕
There are things I like to do for myself ❤️ I’m trying to find a good balance xx
She is such a gorgeous little girl! And kudos to you mommy for taking such wonderful care of her and your boys. Your boys seem very happy and well adjusted and seemed to very much love their sister. And that's what's so important is the love that we all share with each other.
Thank you ❤️ the boys have adjusted so well I’m really proud of them. It’s amazing how resilient children are xx
Gosh sweetie you are amazing. You have two gorgeous boys & an adorable little girl. Sending love you you all 🥰
Thank you so much ❤️
This was the first time I have watched your family. I enjoyed it. I look forward to watching .
Welcome 🤗 ❤️
Look at all that hair! She is so adorable :)
Thank you 😊 she was born with a lovely head of hair, it has a nice curl too for about two seconds before it’s a birds nest again 😂
She is very aware! Beautiful girl, God bless you always!
Thank you so much ❤️
That sweet baby, she's so beautiful ❤️ You seem to be doing a great job, mom!!
Thank you ❤️
What a beautiful family you have. Your children are precious gifts from God, and you are a gift to them. You seemed to be a great mother putting their needs first before yours, and it is difficult because you have two babies that needs a lot of special attention. I pray that God gives you all the strength, love, hope, patience that you need to care for them.
Thank you for your kindness ❤️
Thank you for sharing your family! Lot,s of work but, so much more love!
Definitely 😍
Bless this angel. I too have dystonia, and it has been a ten year battle. There is hope, and cutting edge treatments are emerging. Best wishes to you and your babes .
I’m happy to hear that there is hope. We have only trialed two medicines for Avery at the moment so we still have a lot of exploring to do. Thank you for your comment I like hearing about people’s experiences and I hope you have a happy life and your dystonia is manageable ❤️
You do so well and I admire you 💐💐 when a child is just sick it’s hard work but then have her other issues it adds to the emotions too. She is a cutie 🥰
It feels like she’s been poorly for so long.. she’s just getting over what the dr things is either gastroenteritis or a UTI or both. Poor little girl hardly gets a break. She’s so strong and brave through she still smiles everyday ❤️
What a delicate balance you have to achieve to push Avery to embrace things that in the longterm will enable her to engage with `activities that can enrich her life and simultaneously soothe and nurture.Im old now but spent my career around children with challenges, and I see in this little girl , intelligence and capacity to focus..Where her body may struggle, her mind will be her friend..And what lovely lads you have,!
Thank you so much, I agree that Avery’s cognitive skills may be her strong point, we just need to help her find a way to communicate her thoughts with us ❤️
You’re an amazing mother. You do a great job
Thank you x
What a beautiful little girl you have!!! Oh my goodness.. Look at those little eyes and perfect little nose. She reminds me of my daughter when she was younger. God is so good, and you can tell he shines through every inch of your precious baby girl. Thank you for reminding me god is present, Avery. I just want to hug her and squeeze those little chubby cheeks of hers. 💕🤗🙃can you say baby fever? Lol sending love from California to you and your cute fam girl ❤️
Thank you so much for your kind words 😊❤️
She is beautiful. You are a wonderful Mum. Xx
Thank you so much 😊 ❤️
You are doing an Amazing job. I want to encourage you in your journey. This is not an easy job for anyone. Praying you get help when you need it and also you get rest when you need it. Stay strong and know you are being a positive example for many I’m sure. God Bless!!!!
Thank you so much for your positive words ❤️
What a lovely Mother you are. I also had a child with complex medical needs, so I know what you go through. Sometimes I didn't think I could do it, but the strength always came from somewhere. Just know that your doing great. My advise to you is to take time for yourself to re-fuel. Spa days or even just an audio book and a cup of tea. You will always find a reason you can't, and there will always be something you feel you need to do, but it's so important.
Thank you for your kindness. I know exactly what you mean about finding strength you didn’t know you had ❤️ xx
You are an amazing Mum with gorgeous children! Thank you for sharing!
Thank you so much ❤️
Precious little beautiful girl love the name 💕 may God Bless 🙏 Avery
Thank you so much 😊❤️
Avery loves the sound of your voice.❤
I like to think she does 🥰
Your a wonderful mom god bless you for being so special
Thank you ❤️
She’s so beautiful , love her hair , God’s blessings on your family
Thank you ❤️ I love her hair trying my best to keep it all healthy x
BLESS YOU A MOM OF THREE WITH DISABILITIES REALLY BLESS YOU PLZ JUST MAKE SURE YOU HAVE FRIENDS AND FAMILY SO YOU CAN TAKE TIME FOR YOURSELF LIKE MAYBE AN HOUR BREAK AND TAKE TIME FOR YOU AND YOUR HUSBAND THAT REALLY HELPS YOU ARE A GOOD MOTHER
Thank you for your kind words, my husband and I work as a team and we both have amazing parents who are always willing to lend a hand ❤️
I am continuing my message since I “lost” what I was writing. This is not unusual for me, at 71. 😊 I hope you can find the first part of my message. I live in Texas and my doctor is in Houston, Texas. I was blessed because I lived the first 34 years of my life “ normally”, and then the Dystonia began. I was able to teach 35 years in elementary school, I wanted to teach 40 years, but the Dystonia won out, and I was in too much pain to keep going. I prayed for God to show me what to do, and I retired. I am further blessed because I can stay home, clean house at my own pace( somewhat like a turtle)🐢, and sit in my chair when I wear out. I want to stay in contact with you, and see how little Avery is doing. I hope you have someone to help you, so you don’t wear out. I am a praying person,and I will be praying for you and your family. God bless you, sweetie. Debbie♥️🙏🏼🇺🇸
Thank you so much for your comment I would love to stay in touch too. I’m so glad you’ve found a lifestyle that works for you while managing your dystonia. I hope it doesn’t cause you too much pain. I am married so my husband and I work as a team he’s just camera shy 😊 we both also have wonderful parents always willing to lend a hand ❤️
I ended up having private physiotherapy in addition to what my son was receiving at school. It really helped him a lot. Would highly recommend it
It’s still something I really want to do but there just aren’t many options where we live. Especially with us being unable to travel xx
Oh this is my first meeting with you and Avery and the boys. What a beautiful family. Avery is a doll, shes absolutely beautiful. So are the boys. Ive subscribed, thanks for letting me into your life. ♥️♥️♥️
Thank you so much ❤️
Happy birthday to your son, your children are all sweet and beautiful❤️, you are so young to deal with your children illness i hope you are able to get a break to have a little time just for you. God bless you and your children
Thank you so much for your kind words ❤️
Your such a brave person to do this day n day out. I commend you as a woman. The things we do for our babies.the good the bad the ugly
Thank you for your kind words ❤️
God bless you , you’re a wonderful Mother May God give you all the strength you need. Put your trust in God He will help you. She is a lovely Daughter and she is so good. I pray that you will get some help.
Thank you for your kind words ❤️
Beautiful baby girl!!!!
Such a happy birthday boy!!
🥰❤️
You are an amazing mom
Thank you so much ❤️
I’m a paediatric physio. If she doesn’t tolerate the chair too much, try recline it back a bit more there are levers at the back and let her get used to that position first and then slowly tilt up the more she gets used to it.
I will try that thank you ❤️ I do recline it slightly already maybe it needs to go back more x
Avery is such a sweet baby, she really likes her book and she s interested in things around her which is great, even when you were showing the product you use for her hair, she was looking at it too. That s awesome. I have a son with cerebral palsy too he has tense muscles both in his hands and legs. It s difficult hugs to you mama xxx
Thank you ❤️ it really can be difficult. Avery had always seemed to be interested in things were holding, but as far as I know there’s no conclusive way to find out how their cognitive development is doing. Hugs to you too ❤️
@@mummyandavery yes you can not exactly tell but the fact that she s looking and she s interested, it s the first huge step in the right direction! By the way my son is 3 and I Ve been searching for different ways how to help him, and what I found extremely helpful is the Anat Baniel method he s been doing progress ever since we started with this method, he was already 2 when we started. With other therapies he didn t make any progress in 2 years. This method is good for autism too. There is a good book that Anat Baniel wrote called kids beyond limits, it's great!
Oh I've heard of this method and I did briefly look into it, I'm not going to lie I got a bit overwhelmed and my daughters physio hadn't heard of the method. Our next step is private physio I think, and as she gets older and closer to milestones I will probably start looking into new methods. I like the idea of intensive therapy programmes but it's just not realistic for our family at the moment. xx
@@mummyandavery wish you all the best ❤️
Sounds like you’re juggling a lot. I noticed you pulled her feed from the fridge - not sure if you warm it before giving it but I know for me cold feed hurts my gut. I wondered if that hurts hers too? Was just a thought but obviously you know your kid and do what works for you :)
I discussed that exact thing with my dietician as she told me to keep it in the fridge, she said it should warm to room temp as it feeds through the pump (not sure if I believe that) but we slowly transitioned into the cold milk and she doesn’t seem to respond any differently to when she had it warm xx
You are a wonderful mother❤️❤️❤️
You’re so sweet ❤️
Your daughter is so BEAUTIFUL❤️
Thank you ❤️
Hi, what a beautiful little girl! I am an adult who is visually impaired, just found your channel.
Welcome 😁
She loves books!! Too cute.
God Bless you all.. You have it hard to say the least, however, you have a gorgeous family!! Stay strong. You are amazing...🌺💖
Thank you so much ❤️
And I also wear shoes without laces and love books. Happy birthday Zachary! I am writing this comment using dictation, so if something isn’t written correctly, you know why.
I understand what you’re saying perfectly. You and my son have much in common 😊 x
Aww bless her heart.
BATTLING DYSTONIA - What Happens When My Disabled Daughter Gets Sick | MORNING ROUTINE/Tube Fed Baby
What a beautiful little girl ❤️.x
Thank you ❤️
She is beautiful recently I lost my 14 year old son by LPG blast he died on 1st December I miss him alot
Thank you ❤️ I’m so sorry for your loss 😞
My sincere condolences..
My girls (ages 22yrs and 11yrs) and myself all have very long hair. The tangles seemed never ending, I started using sometimes called wonder water by loreal and it has helped all of our hair immensely! We get tangles but very few and what we do ha e combs put very easily.
Thank you I’ll have to have a look ❤️
You are such a good mom!! ❤️❤️
Aww thank you ❤️
Wer is de haspend
WI is de vader🌹
God bless you and your family ❤️
Thank you ❤️
She is so adorabale 😍🥰 Lv from Sri Lanka!
Thank you so much ❤️
How are all of you coping in the heatwave? I lived in Asia, so I can handle very high heat, but even I had to sleep with my swimsuit on last night, and sat in front of the telly, a.k.a. Netflix yesterday eating Krispy Kreme and Isalys. Popsicles, twister. I told you dictation does not always write correctly what I’m trying to say. But I think it’s going to be even hotter today. Is Zachary OK if you go swimming outside or relaxed times or does he get very overwhelmed? When I go swimming, or do some kind of activity like that, I usually go when it’s more quiet because I can’t see other people and I get very very tired and overwhelmed if the environment is full of noise and people. We went to the trampoline park last week, and we were the only ones there at the end. It was fantastic. But the place had no air-conditioning!
That sounds like a fabulous way to spend a day! Yesterday was incredibly hot, we’re just not built for it we don’t have air con so we had to stay inside with the fan on and curtains closed. Zach seems ok in busy spaces but his coping mechanism is to dive into his imagination and play - which can cause some challenges because he’s not concentrating on what’s going on around him. We have to keep a very close eye xx
God’s Always With you
Hello mummy and Avery! How is she doing?😃👍👍❤️❤️
Hey 😍 Avery is doing ok thank you xx
I wonder if the NHS would give you an aide or helper? Even if they didn’t help hands on with Avery perhaps they could help you around the house. With the shopping. That kind of thing.
We’re in the process of finding someone, not so much to look after Avery for me but to help us get out of the house as we live a car journey from just about anywhere and Avery doesn’t travel well. X
She is such a cutie patootie there's just something about a little girl with the bows and the little button noses so adorable! I just found you Channel today so I don't know exactly what happened with this cerebral palsy or the brain injury I'm sure I'll learn about it soon because I'm going to subscribe today
Thank you so much for following along ❤️ I do plan to film a video all about how it all happened and the early PICU days but I’m just not quite ready emotionally, please bare with me ❤️
There is no except for god love like a mother's 😘
Ahhh her little grumpy cry and bottom lip pout. Poor baby girl it sucks to feel yucky. Hope you feel better soon.
She got over this illness and developed another 😅 poor girl never gets a break. ❤️
Such a beautiful little girl
Thank you ❤️
You are a wonderful mom❤️
Aww thank you so much ❤️
Appreciate you sharing.
Have you introduced massage?
The I Love You massage calms the tummy and gut moving gas and relieving pain.
Most massage therapist can show you how to do.
Might shorten the holding and discomfort after vomiting or if she is at risk of impaction.
Thank you for sharing your journey. 🇨🇦
I give her arms and legs a bit of a rub to sooth her muscles but I’ve not tried doing a tummy massage im not sure if her g tube would interfere? I would like to get a bit more training on how to do it properly ❤️
Your RMT program is a bit different than ours, but the GI tube doesn't interfere with the proper techniques. It reduces inflammation and stimulate the gut.
Some PT are also familiar. You turn it into a loving, bonding experience. You spell the letters in your two fingers with light pressure
Thank you, sounds like something that would be nice to incorporate into her bedtime routine ❤️
God bless all
❤️❤️
She is so cute
Thank you ❤️ I agree 😍😍
You rock her back and forth constantly. Maybe that’s why she throws up. She threw up some during your video. At times she didn’t seem to like all the rocking.
She’s not a sicky baby at all usually, only when she’s poorly. She usually has her feed in her bouncer which is kept relatively still and that when she throws up. The rocking and bouncing has been the only thing that calms her since she was very small. If we’d stop and stay still she’d go into her dystonic patterns and fuss.
@@mummyandavery Understood. Thank you for clarifying. Wishing you strength as you navigate the journey. Avery is absolutely adorable.
Thank you ❤️
I have generalized dystonia so does my mum we have both had deep brain stimulation. I was in a wheelchair for 6 years. Now I walk stand and drive x
Congratulations on your recovery that’s amazing! I’ve heard about deep brain stimulation but I don’t know much about it xx
Changed my life completely. If you ever want some one to talk to just let me know x
I’ve just done a bit of research, sounds like here in the UK it has very strict requirements to qualify for it and I’d imagine they definitely wouldn’t consider it for Avery at this stage as we’ve still got a lot of medicines to explore, thank you for the info though i do like hearing about all the options out there xx
My opinion doesn't really matter, but I think you are awesome! Your kids are super cute!
Thank you so much, the fact that your opinion is a kind one means a lot ❤️
She is such a sweet!! You may also want to ask the therapist is therapist about a gate trainer.
Is this different from a standing frame? Sorry I’m new to all of the equipment xx
@@mummyandavery A standard will keep Avery secure in one place.. The gait trainer is something that she will learn to move. This this is the precursor to walking. I also have cerebral palsy but gait trainers did not exist in the sixties.
Stander.
I understand now, I think the gait trainer is something that will come after the stander. She’s still not used to being on her feet at all really so the priority is making sure her little hips develop properly ❤️ hopefully shortly after that Avery’s physio will be able to order her a gait trainer xx
Nice time
Omg that tummy time toy/equipment you have looks really good have you got a link x
❤️ Do you mean the spin and explore? This is it daisybabyshop.co.uk/toys/lamaze-spin-explore-gym-l27100b1/?gclid=Cj0KCQjw--2aBhD5ARIsALiRlwBu8U_esZi0GLVhI29wpAgyovrv1S27ZNVwF_JgriWDYDr2O_YMQ7gaAkatEALw_wcB
Amazing thanks so much 😊
My heart
She has the prettiest name! 😉
Thank you 😊 x
The penny just dropped 😂 yes it’s a beautiful name 😍
I wish even my mother could be like that but I am unlucky I have a strict mother I wish I could die I consider myself unlucky, it's a request to every parent give your child the same love. otherwise the child be in depression like me and be in medication like me I see this video every night. I feel happy and cry
I’m so sorry you feel this way 😢 I think it’s important to seek comfort in people and communities where you can be appreciated, valued and heard. I’m so glad this video brings you some happiness.
@@mummyandavery thanks sister I love you
I'm diabetic and I understand how hard it is to cut nails I have it professionally done by a foot health care specialist
Averys nails are still hard to cut, I can always tell when she needs them doing because I end up with scratches all over me 😂 xx
Avery is beautiful!
Thank you ❤️
Your baby looks sweet hang in there.
Thank you ❤️
With your health care will the health care pay for a aid to help give u a break a few hrs a week, a person to come in twice a month to help clean your house, not saying your house needs cleaning i just know my sister gets this help free in the state she lives in the usa.
Yes and no, it all depends on need. At the moment I am looking for someone to lend me a hand, but not to care for Avery, more so I can get out of the house in the car. Avery doesn’t travel well and it’s a bit of a safety issue so we’re stuck at home a lot of the time as I need someone sat next to her car seat to keep her calm xx
Has she been evaluated by a pediatric ophthalmologist? Movement Lesson with Michelle Turner is a fantastic at home resource
She’s seen an eye specialised and will be seeing them again soon xx
My daughter has Dystonia as well I haven’t met another mom who child has it and it’s so funny how ya daughter name is Avery and that’s my husbands middle name that’s how we came up with my daughter name which I wanted to make it more girly so we did Aviana she’s in tons of Threaphy since she was small and she’s all kinda Drs
I hadn’t even heard of it before Avery was born, I have only met one other person physically who has twins with it but I have met a lot of people through my channel virtually. How lovely to name her after your husband. I did read Avery was originally a male name but I loved it and I don’t think she would have suited anything else now 🥰 how old is your daughter? How have you found her dystonia to impact her development? It seems to get in the way of everything Avery tries to learn to do cx
I’m telling you from a person with cerebral palsy yes you should do private PT
I am still pretty convinced it’s the route we want to take. Still doing my research 🤞🏼
The wait is long but if her Doctor refers, you can have as many sessions as deemed necessary while learning techniques you do through the week. It can advance progress significantly before school to provide the edge needed from my experience. NHS system will provide and if doctor wants to hold off referral but feels good idea for you, he would still help recommend one privately.
We all have off days.
For the tangles, would a piece of satin where her head rests (mattress, extender, etc) would help?
I did think would a silk pillowcase work. I think I will try it xx
She's such a cutie
Thank you ❤️
This is my first time watching. Another you tuber has a son with Cerebral Palsey. They give him botox injections and have started him on a drug called Baclofen. They are overjoyed with the results. The channel is called House of Hughes.
I am already subscribed 😂 I feel like she and I have a lot in common and she’s lovely to watch. Baclofen and Botox are still on the cards but we’re still increasing her Gabapentin at the moment, I don’t see much improvement so as soon as Avery gets another appointment with her neurologist I will be discussing her medicine xx
God bless you 🙏🙏🙏