THE DIFFICULT REALITY ABOUT MY DAUGHTER'S CONDITION | Level 5 Cerebral Palsy (TRIGGER WARNING)
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- เผยแพร่เมื่อ 16 ต.ค. 2024
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I really really wish I was there with you guys right now. I have had cerebral palsy for 47 years now. I want to give you a hug and be there for you. I am a level three cerebral palsy. Everyone with cerebral palsy are effected differently. Hang in there. None of this is your and Josh’s fault at all. Trust your mommy and daddy instincts.❤🙏❤️🙏
Thank you ❤️ we’d never been told her level before. I will hug her for you ❤️❤️
@@mummyandavery yes please give her a hug for me. I have a life with Tammi group on Facebook. I will not share to much information or none of all I would like to post on there for everyone to lift up your family in prayer? If that’s okay . I also want you to know that you are not alone. I know we are a country apart but you’re always in my thoughts and prayers.
@@mummyandavery❤
It made my baby quite angry and I had to have her taken off of it before she hurt herself. She bounced down a set of stair because she was mad. And this momma said no more. ❤
Thank you so much for sharing your thoughts about Avery’s prognosis. I’m more of a realist myself, so I imagine I would feel similar to you. In terms of having a positive outlook, you do focus on what she has, e.g. a loving, supportive extended family and a devoted immediate family. She has access to different kinds of experiences, e.g. at Little Harbor and preschool/nursery. That’s a realistic way to be positive. I think that’s important because people are often most upset when their high expectations aren’t met. Hope you had a lovely time with your family! 😁
I think it’s so easy to get caught up in unrealised hopes because you hear of so many miracles, but I think if I wasn’t realistic I would push Avery too hard, that wouldn’t make her happy and that’s all I want for her xx
Avery will have a lovely life because she’s part of a loving and caring family. I hope that when she starts nursery you’ll see the benefits that it will bring such as widening her environment and giving her more learning opportunities. I’m glad that you’re being realistic; it’s one of the hardest things to do but yes, be hopeful too. If I were you I’d be very proud of the achievements that Avery has already made as that is all due to your good parenting. ❤❤
I’m so proud of her, she fights so hard everyday still with a smile on her face ❤️
I work with children’s physiotherapists (in admin) and I have seen children with CP improve so much with pt, Avery is such a lucky girl to have you and Josh as her parents, you are such loving, caring parents. Please let me know if there is anything you would like me to ask the physios. One of our senior physios has left the nhs and has now opened up a hippotherapy stables, she offers holidays for families so they can all have a break away. Please let me know if you would be interested any time in the future xx
What a wonderful thing to do, I’ve not heard of it is it in the UK? Sadly Avery doesn’t get enough time with her physiotherapist, maybe an hour a month. I do my best in between but I wish she had more xx
@@mummyandavery yes, it’s near Hereford. It’s physiotherapy on ponies, I just took the following from google “Hippotherapy is a physical, occupational, and speech therapy that utilizes the natural gait and movement of a horse to provide motor, and sensory input. It is based on improvement of neurologic functions, and sensory processes, and used for patients with physical, and mental disorders”. The children love it and do really well. Unfortunately with the NHS the way it is it is very difficult to offer all the physio a child needs 😞
@@mummyandaveryI was just wondering if Avery will beable to walk, and talk? You need pt more than once a month. It is amazing I heard that the brain can repair itself. She may surprise you. She is the cutest little girl.
I can’t imagine what you and Josh are feeling . As a parent you want your child to always be happy , comfortable and be able to communicate . So you do the best you can by providing all the therapies she needs with Love ! Prayers are just an added bonus . I’m glad the PT was open and honest with you ,as you are with your loving u tube family . ❤ to all from the USA !
Thank you so much 🥰❤️❤️
My heart is aching for you today. I understand how on one hand you appreciate the honesty of your physio but how hard it must be to hear her truth. I know you will never give up on your beautiful girl and do everything you can to make her life the best that it can be. Sending love and hugs your way. ❤️🇨🇦
Thank you ❤️ I can still hope for the best but I’d rather make sure she’s happy and comfortable doing whatever she is able to do xx
I think that’s a very healthy way of thinking about Avery’s future, being realistic but not to give up hope. The bottom line being she’s healthy and happy as possible. Thanks for sharing your thoughts
Thank you so much ❤️
Your point of view.. is on point! Knowledge, acceptance and also hope is key. And the thing you want the most for her, her being happy you know you've always made sure of that! She is SO loved, she has a great family and an AMAZING mom! A mom who even though her pain is unbearable never gives up but goes above and beyond. Indeed, this reality may be sad but you know something? In a way she IS a miracle child, she survived the unthinkable, she's thriving and she IS happy. ~ Lots of love!!!
She is a miracle, and as much as we will always support her to do her best all that really matters is that she’s happy doing whatever it is that she can or cannot do ❤️
Hi Chrissy how's everything and everyone? Your videos are really inspirational! As a CP sufferer myself they really help me when I having a rough day like today. My back's been really bad today but your video is cheering me up so thank you so much for all you do! Love you all ❤🥰
I’m really glad my videos are helping you in some way ❤️ things are ok with us at the moment, just settling back into routine now the boys are back at school xx
@miamartin479 I really don't think suffering is the right word. C p is a condition and not a chronic illness. You can still have a wonderful life in spite of the challenges you face. Don't think of the negative.
@@mummyandavery Hi glad everything is going well. Hope Zach and Eli have a great year at school xx
I cannot get over how beautiful Avery is! Just wow! One of the most beautiful babies I’ve ever seen 😍
Thank you you’re so sweet ❤️
Hi - your sons are so wonderful and learning so much from you. When my sons were little I used to bake and decorate so I taught them to do it as well. Then I was blessed with twin grandsons and was lucky enough to work remotely so I taught them baking, cooking and decorating skills. Now the twins are grown and visit often as they live close. I love getting a message asking if they may come over and do some baking FOR me. I’m always available and we have a lovely time. Most of the baked goods go home with them or to their friends.
Loved your older son whistling. Hopefully he will continue and start whistling along with songs. You are truly a lovely person and fantastic mother.
Thank you so much ❤️ that sounds wonderful and what lovely memories they will have. I remember baking with my mum when I was little, I always got excited about it so I wanted to create the same thing for the boys xx
YES to the head band! 100% suits you! You are stunning! Inside and out!
Thank you 🥰❤️❤️
Chrissie...thank you for being so vulnerable about your journey with your sweet Pudding Princess! I love her to bits and always hold you all close in my heart and my every prayer. I see such a strong little powerful force to be reckoned with in Avery and I'm going to watch her happiness multiply for the rest of my days. You and Josh are equipping each child for life in the perfect way and time for each and I'm so happy you met and are Sharing this beautiful family together. I realise I go on a bit but honestly, your videos are the brightest spots in my days so I'm grateful. You don't put a wrong foot forward and that's difficult to manage. Take care and I look forward to your future videos! ❤ Never lose sight of your bliss... love, Michele
Thank you so much this was so incredibly sweet ❤️ thank you for your continued love and support xx
There's knowing and there's knowing, you will always be I Avery's corner and that gives her the best she can ever get. I praise professionals that are upfront and completely honest, you knew any way, but now you know for definite. You will know what's more important in ti e, I agree with you, make her happy as you all do now. I think happiness is the most important thing, she knows who you all are and her smile says how much you light up her world just the same as she lights up all of yours xxx
Her happiness is number one. We could push her to her limits everyday trying to reach milestones that her body may not be capable of, what would be the point if she was miserable? That’s why I don’t like pushing her when she’s not tolerating things. Xx
I totally agree, I would be the same, but the therapist that told you that is a woman after my own heart, im a health care professional, and im my opinion what your doing is spot on, her life is precious and being loved and being happy are way above anything that's probably not going to benefit Avery, shes a lucky little lady xxxx with a lovely family xx
Her ranking is only a number. When I was little, The doctor gave my mom a diagnosis of severe. Although I'm retired now, I did work for ten years. I went to college and I am living on my own with community supports.
That’s incredible! This gives me a lot of hope ❤️
Let me tell you a little bit about my specific diagnosis. I have difficulty with visual spatial perception, My verbal I q is very high and my speech was not affected. However, performance iq is in the mentally retarded range.
In spite of these difficulties, over the years I have learned to compensate and I am really enjoying life.
Avery definitely has a purpose, and she is here for a reason.. I'm eager to follow you in your journey to see exactly what that is.
You totally make sense,well spoken. Your baby girl is a cutie pie
Thank you ❤️❤️
Aww she’s doing so well with sit to stand exercises!
It’s always hard to hear the negative things even when we know them, as it makes it real. Avery is lucky to have such a lovely family who will do whatever she needs, and will love her regardless of what she can or cannot achieve. I think it’s healthy to hope but also be realistic at the same time. Everything you’re feeling and going through is so normal and valid! Being sad is fine, being happy is fine, being disappointed is fine ❤️ xx
Thank you ❤️ it’s a rollercoaster of emotions. All I want for Avery is for her to have a good quality of life. Whatever that looks like xx
I fully understand what you are letting us know. My 7 year old granddaughter has CP very severe. Loves her motorised wheelchair with a joystick. Loves whizzing around.. Lack of oxygen at birth. She's a very happy little girl like Avery. Looks like Avery is becoming more vocal 😊
Thank you ❤️ I’m glad your granddaughter is doing well. It must feel liberating when they’re able to start using an electric wheelchair xx
I have cerebral palsy and they told my parents that I wasn’t be able to walk and talk and I am able to walk but very limited and I’m able to talk as well I have a feeling Avery will be able to do those things
Thank you I really hope so 🤞🏼❤️
My hope and prayer is that all of your hopes and prayers come true. You and Josh are great parents. Hug that little one for me. LOVE!!
Thank you so much, I certainly will ❤️
I totally agree with you!! Thanks for sharing what the physio doctor said!!! I am just going to continue praying for little Avery to have a amazing miracle!!!
Thank you so much ❤️
Woah, you have an apple tree in your backyard? So cool!
There are two and one in the front. Sadly most of the apples get infested but we managed to get a few xx
Zach cracks me up with his expressions
He’s one of a kind 🥰
You are an amazing mom. Bless you.
Thank you so much ❤️
Hey Chrissie, what you have had to deal with in 1 week could actually put someone into a severe mental health breakdown as that is all so tough for anyone to deal with. Honestly you are supermum. Avery is so clever as she may not be able to voice it but she was clearly trying to tell you something important and that was amazing to hear her talking away and hearing her wee voice. It just shows with all your kids even the boys and how well behaved they are and the manners on them that you and Josh are absolutely amazing parents and should be proud of all the kids as they are an absolute credit to yous, best kids in town. I really hope from now yous will get good news for a change as yous certainly deserve some. I hope the boys are looking forward to getting back to school and enjoy it this year. Love and hugs to you all xxx
Thank you so much that means a lot ❤️ it’s tough but I’m so grateful for how well she’s doing, things could always be worse and being grateful for her and the boys keeps me going, I really am proud of them xx
Hello. The pastries are called pinwheels. That’s what I call them. Your cookies look amazing. What a cook. I wished I could try the pie lol. Great video. Luv u all
Thank you so much ❤️ Zach ate 2 slices and my dad ate the rest 😂 they said it was yummy xx
Such a Wonderful Loving and Caring Family surrounds Avery 💗
Thank you ❤️
Love your family and your vlogs. Sorry for news, but we see you are doing the very best that can be done for her. She is beautiful and loved. 🙏🏻❤️
Thank you ❤️❤️
You explained that so well. Thank you for sharing your thoughts with us. Xx
Thank you ❤️
Never give up hope. ❤❤
❤️❤️
Wish I had those apple trees in my yard, as we sell candy apples on our snow cone truck! As for lil miss sunshine no matter what the future holds she is such a beautiful, happy, loved child and the possibilities are endless. Just as you said being a realist doesn’t mean that you don’t hope and pray. Sending y’all love and prayers everyday, 👋👋NC, USA
Thank you so much ❤️❤️
Will she miss a skill she has never had? A pastor and I were discussed the morality of raising children in the hospital in strict isolation. Many are born or lose their intestines shortly after birth. They never participate in activities becuz of complex infections. He asked me if the child minded not going to activities, or was I upset becuz that’s what childhood is to me. I didn’t think so, but it was helpful to think thru that point. Sorry if this upsets you in any way. Not meant to. Hugs. You are a great mom.
This is what I think, it was always sadden me that Avery can’t experience certain things, but I hope and pray that she won’t feel like she’s missed out on anything xx
You both are so beautiful sending prayers💕🙏🙏
Thank you ❤️
Have you ever tried a fabric swing for Avery? We used them in a special needs children and the were fantastic. You can sit them up a little in it lay them on their back or tummy.
Like a hammock type of thing. Can help with head control but also comfort. Also a tepee or tent add fairy lights and hanging things we used to hang or different textures and sound things in it. Also it doesn't matter if you know your child's disabilities or not but hearing it is very different and difficult.
Yes she loves them. They have one in her new nursery I’m really excited about it xx
It seems like it upsets Avery when you talk about her condition🥺 my daughter is 1 years old and she acts similarly when we discuss hers. When she was just a few months old she would burst in to tears when we talked about it. It seemed like she shouldn’t have been so aware at that age but it happened every single time.
I’ve never really thought about it like that I will have to watch out for her reaction xx
Avery is soo incredibly pretty❤.
I also had keppra, it made me tired in the beginning and dizzy, but it gets a lot better by time I didnt really have side effects any more and is a great medicament.
Thank you for sharing ❤️ I’m hoping we can wean off keppra eventually. Leveteracetam doesn’t seem to be as effective for Avery anymore xx
I have only just found you so know nothing about you, but you're an excellent teacher and the pie looks delicious.
Thank you so much 🥰❤️
Avery has a loving family and though she can’t talk I believe she knows that. She is happy many times and I believe that she has a purpose in earth. The brain does finish fully developing until our late 20s so anything is possible
Thank you ❤️ she will have a fulfilled life regardless we will make sure of that xx
Thanks for sharing your thoughts about Avrey's prognosis. The apples looked great I would definitely buy them😁. Overall great videoxx❤️❤️
Thank you so much ❤️
Lovely to see your boys cooking with you 😊
Thank you 🥰
Baking with children is, well, not one of my favorites. You handled it with grace though!
I find it quite stressful at times, especially when you’ve got children that insist on licking their fingers constantly 😂 luckily we have a bottle of sanitizer in the kitchen. I want them to have the memories of doing these things though like I do xx
Do you have a newton mattress? Its fully breathable!
No it’s the mattress designed for the special bed she has, the sheet is breathable though xx
She's so gorgeous girl ❤
I gotta disagree with Averys Physiotherapist... IF she was right we would've have physical therapy at all... physical therapy is a HUGE component of correcting issues... DON'T stop what ur doing... even IF ur delaying the inevitable, physical therapy may lessen the outcome. Avery's leg can be manipulated to a degree and that goal is worth EVERYTHING ur doing. I just find it difficult to take what she said as a fact... if Physiotherapy isn't going to help then why does she even see Avery... u know what I mean? ❤
Ur an ahhhmazing Mom and I would find a different PT that has the same goals in mind as you and Josh!!! ❤❤❤
PS- I am not criticizing you at all. Ur truly such an ahhhmazing Mum. Absolute perfection
Thank you ❤️ I’m never going to stop being hopeful. I think I just need to be realistic so I’m not always ripping myself apart when averys not meeting milestones despite what we’re doing. But there are so many children that improve, fingers crossed Avery will be one of them ❤️
Exactly ❤
❤️❤️
Hi ❤, You are such a beautiful lovely mummy you really don't give yourself enough credit bless your heart ❤ You do so much with all your kids, keep a house going, all of the yummy cooking you do and school 🚸 hospital 🏥 trips I think that your amazing oh and doing your channel whilst all the rest I really love watching your channel such great at keeping it real and I don't know how you do it all..but I have a lot of heart for you all even though we have never met. Take care you lovelys from nana Val near Bournemouth 😊💐💖💖💙💙💙💙
Thank you so much that means a lot ❤️❤️
I don’t have CP but due to other physical disabilities I am rated GMFCS 5 currently xx
Im still learning a lot of the medical terms. Sometimes I feel like doctors are so afraid to give a false diagnosis they don’t give you all the information xx
Try the apple pie again, you might like it because jam is literally cooked fruit ❤❤❤
I’ve tried it I hate it, don’t know what it is about desserts with fruit. Strawberry jam is ok but that’s about it xx
Hi there I just want to let you know that your doing an amazing job with Avery. I totally get it that your frustrated to make sure she is happy. I will totally with you that in the long wrong being happy for me is more important then not being totally independent. Like I’ve said in other videos I’m a very high level spinal cord injury and I’m pretty much total care have to have 24 hour care due to the level of injury and being ventilator dependent 24 7. I’m able to get around on my own thanks to technology and using a sip n puff system to operate my chair. So for myself I totally get what your saying and also agree with you one hundred percent. You and your husband just continue to be the amazing parents that you are to all your kids. You got this
Thank you ❤️ I’m glad you’ve found a way to gain a little bit of independence. Technology is incredible these days xx
I like the head band, I wear them all of the time❤❤
Thank you ❤️
I I know what you mean about believing, I have cancer, I would love to believe, but I don’t. If grid existed why would I have cancer? Why would Avery have CP. Trust in science. You are a marvelous mum and are doing the utmost for Avery. As much as I can, I try to understand how you feel. Best wishes
Thank you, I like to think I do have faith, but I also like to be realistic and trust the facts and experience so far. Averys future is unknown but I think we’re far enough into her journey now where we can make assumptions xx
I’m sorry to hear about your cancer ❤️
To say that god doesn’t exist because someone has cancer,etc.? That’s just wrong. God didn’t give us a perfect world. Everyone has their struggles.god is not a mean person. He didn’t give someone cancer or a disability as punishment or anything.
What gorgeous boys....beautiful family beautiful mummy...and I LOVE your hairband! xx
Thank you so much 🥰❤️
I love watching you bake I’m always hungry afterwards lol !
Thank you I’m glad you enjoy it ❤️
Avery is a beautifull little girl.
Thank you 🥰❤️
Was Avery born this way? She has got to be the most beautiful sweet girl I have ever seen- you are doing great!
Thank you so much ❤️ she was actually born perfectly healthy, she went into a 40 minute cardiac arrest when she was three days old xx
❤ Don't lose hope anything is possible.
Thank you ❤️
Just remember they are only numbers, whos to say that Avery in her own way and time could do them. She was sure telling us a story while you shared the update on her.
No matter what, Avery is a very loved and wanted child and she knows it.
Praying that nothing comes of Zachs tests.
Those boys are in constant competitiveness. I could just see them doing really well at selling the apples.
Thank you ❤️ she will always be loved and cared for no matter what. Sadly the apples didn’t sell but it was still a nice activity to do with them xx
God bless Avery and your family on this hard journey! Trust in God as he will surely help and guide you. She's such a beautiful little girl and God has put her here for purpose. You have the patience of a Saint! God has also blessed you to be her MOM! Take care and you are doing a remarkable job taking care of Avery! Peace be with you and your family! 💖🙏🤗
Thank you so much ❤️❤️
❤ Hi, chrissy, it seems like avery is vocalizing on que. She may not be able to verbalize it. But she knows you're talking about her. So like her physical therapist said she is in fact very aware.
In the u s, Gaiters are braces. As far as her communication, You may want to do the research on a a computerized voice. I understand that this might be a couple years down the road.
She makes sounds back to us when we copy her as well, I just wish i could read her mind. Yes I’ve seen eyegaze software work wonders too. Avery is still a little young but we will find a way to communicate with her one day xx
Avery is one very strong and smart young lady, she gets that from her Mum.. you are both fighters, my heart and prayers are going out for you. You got a hard diagnosis and a hefty dose of reality. You can see in past videos how she folllows you and her brothers and smiles, her eyes light up. The video of her laughing while Josh was chasing you around the table was priceless. Keep pushing on and fighting for your baby’s health and happiness.. Prayers for all of you. ❤❤
Dear Mummy, there are Millions of children missing out love in this World and I personally think this is the Main Thing destroying quality of life. Avery is soooooooo incredibly loved and she knows that and thats more than anything else in this world. ❤
So dont be too nervous about her Future, this cute little princess will find her way❤
Thank you that means a lot ❤️
Avery chatting with you at the end is adorable. She seems to be really trying to tell you how she feels and her experience. Even through watching your videos I can see Avery progressing, it’s slower than ‘normal’ but she definitely seems to be learning how to do the things she wants in her own adapted way. Hope you are all ok and the boys are doing ok back at school. ❤
Thank you ❤️ I love it when Avery interacts. Sometimes it’s hard to get her attention but it does feel like she’s telling us things xx
Nanit camera?
Possibly, I do like the camera we have I just think it’s on its last legs xx
I’m a realist too and I think you are right on with preparing yourself for the inevitable but continue to have hope for advancement in medicine and /or a miracle. Nothing wrong with that. What is wrong is your dislike of delicious apple pie 😬😁 ( coming from an American- we love apple pie! You know the saying “ as American as apple pie!!🤣). JUST KIDDING about the apple pie thing!! Hope your dad got to enjoy it. How did it turn out?
Even I thought it looked and smelled really good, I wish I liked it but I’ve never liked cooked fruit. My dad loved it xx
Mom quilt can be such an anchor. Try to keep it from burdening you. You are doing as much as possible for your sweet girl.
Thank you ❤️
Good morning!
Good evening ☺️
Hey, in USA kids with CP get Botox for their legs, maybe is worth to get to find out about it❤
We’re on a waiting list for Avery to get Botox in her left leg 😊 xx
Love when the boys help you with Avery bless them they're are so Supportive with Avery any news on zack blood hole the blood the had they can use you got of made some Toffee apples love it when you bake with the boys so cute Apple like looked amazing in more of a savoury girl lol the Boys do make me laugh Poor Avery but she Got the best caring family ever please give her a huge hug from me 💖💖💖💖💖💖💖
They’re so good with her ❤️ no news on the bloods yet hopefully no news is good news 🤞🏼 xx
U should try this um fenal I think it's called & it untighens like loosens the tightness in her body along with the Botox it loosens her body
I don’t think I’ve heard of that before. I only know of fennel the herb xx
Hughes sorry they can tell u what they do for there guy with Cerebral posy fenal I think something that loosens there's sons joints & muscles
I do follow the house of Hughes 🥰🥰
😮
Hold on let me tell u the family
I think it looks nice on u
Thank you 😊
The huges family they have a son with credible posey u should go to them
i love your vidoes but they do need to be slightly shorter and less sit down and just talk just a few not all . this is omeone with server ADHD
Thank you for your feedback ❤️