MY BABY HAD A SEIZURE | Why It's Scary When My Disabled Daughter Gets Sick - Aspiration Pneumonia

[@ck4599]

You look like a pro at building that furniture!!!

[@mummyandavery]

Haha thank you, it’s all the ikea furniture that did it 😂❤️

[@candicesailsbury1355]

This is awful. A sick child is so upsetting. I’m so sorry for y’all. Love y’all bunches 💙💖💙💙💙💖

[@mummyandavery]

Thank you so much ❤️ Avery is doing a lot better now xx

[@katewallace975]

You are the best mum that Avery could have (also your boys obviously) x

[@mummyandavery]

Thank you so much that’s sweet of you to say ❤️

[@aliciakillen1940]

You’re doing absolutely everything you can. I can only imagine how upsetting this is for your family. The blended diet was a great idea, don’t feel bad about trying it, no one could have foreseen these complications. You’re doing everything right, sadly that doesn’t mean everything you try will work out, know what I mean? Will be hoping for the best for her! Everyone get well soon - from colorado USA

[@mummyandavery]

Yes I know exactly what you mean. And as much as I keep trying new things that I think may help Avery it just never seems to work as well as I’d hoped for her.. she seems to be a very complex child 😂❤️

[@relax2dream164]

I’m so sorry you are struggling right now. Your life, especially when you aren’t feeling well, must feel overwhelming at times. You must be physically and emotionally exhausted with all your responsibilities. I hope you get everything worked out for sweet Avery. She such a lovely child. I must say your sons seem like such terrific kids. I hope everyone gets well soon. I know you and hubby do your best!❤️🇨🇦

[@mummyandavery]

Thank you so much I appreciate it ❤️❤️

[@ginnywyatt5720]

I love watching you with your kiddos and the joy on sweet Avery's face when you talk to her. My heart goes out to you. Sending you so much love and prayers that all things go upward to the best side for Avery, she is the sweetest angel.💕💕💕💕💕💕🙏🙏🙏🙏🙏🙏

[@mummyandavery]

Thank you so much ❤️ I’m glad you enjoy the videos 🥰

[@adrianamanning175]

The boys look cute . I am sorry that you feel sad. I understand how scary surgeries can be. I have faith that our beautiful Avery will be just fine. I have faith that she will get better soon. You are an awsome mother to your children and God is looking over you and your family. Thank you for sharing you feelings , as a mother i completely understand your fears. Remember that you and Avery can do this ❤🥰

[@mummyandavery]

Thank you ❤️ your comments are definitely making me feel more positive 🥰

[@marikon3]

It's so unfair to try SO hard for something you want SO badly, but no matter what you do you're stuck and left with a feeling of hopelessness bc you do everything but it never feels like it's enough! And at times like these you may doubt everything.. But NEVER doubt what a BRILLIANT and WONDERFUL mom you are and you do YOUR ABSOLUTE BEST for your family!! Ofc you're only human (hmm.. I'm starting to doubt it..) you go so so far above and beyond for your kids.. it's almost unreal! You have so much strength, even if you get sad you start and end the video on a positive note 🙂😘 Btw, EVERYBODY, EVERYWHERE IS GETTING SICK OVER AND OVER AGAIN! SOMETHING IS GOING REALLY WRONG IN THE WORLD - Sending my love and best wishes to everyone! 🔵 Your friend from Greece!!

[@mummyandavery]

Thank you, you’ve definitely described the feeling right. I’m trying my best to stay positive as long as what I’m doing is making my children happy that’s the main thing. We’re all doing much better now. Thank you so much for your kind words ❤️ and I know! I don’t know what’s going on there’s so much going around at the moment xx

[@happyheart4086]

Sorry about Avery, this time of the year school age kids are having so many coughs colds viruses, and I guess Avery is compromised and picks things up and then goes down with a bang. It's good you have access to a team of professionals and they listen to you and include you in decisions which makes so much sense, you know your daughter better than anyone. 💜

[@mummyandavery]

Thank you ❤️ unfortunately Avery was pretty much poorly back to back through the summer so I’m dreading what winter will do to her. You’re exactly right, I’ve learnt over the last year or so that a parents opinion is just as important as the medical professionals, I talked about this in a video recently. We absolutely know our children best ❤️

[@iamrockette]

I’m so sorry to hear about Avery’s health issues. 😞 I hope things can get figured out soon❤️❤️❤️❤️❤️ Hugs from USA

[@mummyandavery]

Thank you ❤️ me too 🤞🏼xx

[@heididelmarter7211]

I love your channel so much, I look forward to watching your videos each and every week. I was crying with you while watching your video today about what you all have been through. I love seeing the boys with sweet and beautiful Avery. I’m praying for you all and surely hope you get answers quickly.

[@mummyandavery]

Thank you so much ❤️ I’m glad you’re enjoying our journey, but I’m sorry this made you cry. I’ll get back to being positive I’m sure it’s just a rough spell ❤️

[@sandralowe2874]

I really am so sorry to hear about the awful time your having and the decisions you have to make I’m sending hugs and love ❤

[@mummyandavery]

Thank you I appreciate it ❤️❤️

[@AD-sn5en]

My prayer for baby…. Dear God please wrap your mighty arms around Avery. Please keep her safe and happy always. I believe the very hands that sculpted the Earth and holds the oceans in your hands will care for our baby girl. Thank you Father, Amen. Children are the most precious thing in this world and please pray for Gods strength during the hard times, you will feel it I promise.

[@mummyandavery]

Amen. That was beautiful ❤️

[@AD-sn5en]

@@mummyandavery ❤️

[@izzyadam1145]

I am sending you so much love, support and strength; I'm saddened to hear about Avery's health taking this unexpected turn. Poor girl. I hope things clear up for her soon xoxox.

[@mummyandavery]

Thank you so much it means a lot ❤️❤️

[@user-mp4zs2by9m]

Prayers & so much Care are with You & Avery, hoping symptoms soon ease. Love to all your family! …The boys looked fabulous for Halloween! 🤍🇨🇦

[@mummyandavery]

Thank you so much ❤️❤️

[@nan639hildonen]

I'm so sorry that this has happened. What a scary situation. I would be just as worried about her during the overnights. I'm sure you have had many sleepless nights since this happened. I hope that between your doctors and dietician, you have come up with a nutrition plan moving forward. Keep us posted! ❤

[@mummyandavery]

Thank you ❤️ overnight is definitely daunting as sometimes I fear her SATs monitor wouldn’t wake me (although it always does) the seizures are worrisome, I just hope this doesn’t transpire into epilepsy, poor girl has enough going on xx

[@tracyjane1000]

Sending you so much love and hoping that you find the right feeding regime for Avery. Trust your gut and follow it. Praying for you that it is just a rough patch and that you manage to keep her feeds as they are. ❤️❤️ She is just so gorgeous and has definitely stolen a little piece of my heart.

[@mummyandavery]

Thank you so much I appreciate your wishes ❤️❤️

[@lisatague305]

Aww , sending love and hugs to you and Avery . Big decisions to be made about little Miss Avery , I trust your instincts and you should too ! You are such a good Mom and the family is so lucky to have you . Avery is a complicated baby , this time of the year is especially difficult with all the viruses going around . ❤ to you all

[@mummyandavery]

Thank you ❤️ I did trust my instinct and we’ve put her back onto her g tube feed. She’s doing a lot better, I suppose time will tell we’d need to wait to see when she catches another virus if she’s still the same with her vomiting xx

[@sandrasmith5943]

I am so sorry for Avery and her problems. She is so pretty and gorgeous. Keep up your good work. Brilliant Mum xx💕

[@mummyandavery]

Thank you so much ❤️❤️

[@patriciaberns4254]

So sorry for all that you are going thru. Sending prayers for Avery to be well.🙏🏻🙏🏻🙏🏻

[@mummyandavery]

Thank you so much 🥰❤️

[@aliciakillen1940]

Since Covid started I have been keeping twins home. I came up with a day of home fun….We will do a Halloween craft, dress up in a costume, a candy hunt around the house and bob for apples, then we Walk the neighborhood and look at decorations, finally a blindfold taste test ( which they love)and watch 1 Harry Potter movie. This year I finally allowed them to go trick or treating and trunk or treating and church Halloween party……but they still wanted all the other stuff too! So it’s a lot of work!! But they absolutely love it all

[@mummyandavery]

That sounds incredible. What an amazing momma you are, it’s the little traditions that really stick with children 🥰❤️

[@brandispry576]

Loved the boys Halloween costumes!!!

[@mummyandavery]

Thank you 😂❤️

[@kimtongo3533]

I think u should do what u said about going to the pediatric milk again just to see. Bless her heart!!!! I hope she gets better and doesn’t keep getting sick!!! She is too precious!!! You and your husband are wonderful parents!!!!!❤🙏🔆✨🙏🔆🙏💙

[@mummyandavery]

We have put her back on the g tube feed.. so far things have settled a little so seems to have been the right choice. Time will tell 🤞🏼 thank you so much ❤️❤️

[@jeansmith6639]

Sending you all my love 💓 poor Avery she is so adorable ❤️ she will be in my prayers xxxxxxx

[@mummyandavery]

Thank you 🥰❤️❤️

[@patriciaberns4254]

Sending prayers for a solution to all this and strength for you and your family. 🙏🏻🙏🏻🙏🏻🙏🏻

[@mummyandavery]

Thank you so much 🙏❤️

[@bubblealien]

Sending so much love. You are an incredible mother, Im so sorry things have taken a bad turn but I know that no matter how you decide to move forward you will do what is best for Avery. We all love and support you💕

[@mummyandavery]

Thank you so much I really appreciate it ❤️

[@bubblealien]

@@mummyandavery 💖💖💖💖

[@lyndasmullen7426]

Looking at your video and all I went through with my daughter you are going through with avery. Your so strong and an amazing mama it can be so hard sometimes, hugs to avery 💖♥️

[@mummyandavery]

Thank you so much ❤️ you know exactly how it all feels then xx

[@jeanniefox3350]

Love and prayers being sent your way!🥰🙏

[@mummyandavery]

Thank you 🙏 ❤️

[@ck4599]

Avery has the most beautiful smile❤️

[@mummyandavery]

She does 🥰🥰

[@ppthegreatest3941]

Keep strong darling, you are the best mummy. Sending hugs to you all xsuex

[@mummyandavery]

Thank you so much you’re so sweet ❤️

[@allisong2159]

I would be very curious to see what a barium swallow study would show as she is getting tube fed…..get better sweet little Avery! Sending hugs and love!

[@mummyandavery]

She has had one of these tests.. everything empties properly but it did show free reflux xx

[@leannestanfill2871]

Sending love and good thoughts to you and Avery. She is adorable and you are an amazing mon ❤️

[@mummyandavery]

Thank you so much ❤️❤️

[@sonja9813]

Oh Chrissy, I'm so sorry for everything you're going through... You're such a gorgeous young lady and at 55, I feel a bit motherly towards you lol 😃 First of all, you have immaculate taste and would be a very good interior designer. That's a natural talent I've always admired in people, in part because I don't have it. Most of all I have tremendous respect for you for being a truly beautiful mother. Your devotion to your children is palpable and shines through in every video. Your boys are adorable and very loving, clearly traits they get from you. It's reassuring that your mum is equally full of love for you and your babies. The support of a good mother is the best foundation we have in life. And dear little Avery... I can't quite put into words just how beautiful she is. There wouldn't be a mother alive who wouldn't want a little girl just like her. I suffer from clinical depression but seeing Avery never fails to lift my mood and put a smile on my face. One thing I have learnt in life is to always trust your intuition. Whatever decision you make will be the right one and yes, sometimes the experts don't get it right because we're all individuals. It's really not for me to say, and please don't get me wrong, as this is coming from a place of genuine caring, but I strongly feel that the introduction of blended foods was not the cause of Avery's current medical problems. I feel that the meals you prepare are of great benefit to her but again, it's only what I think and I may be entirely wrong. I wish I could be of more help, as I'm sure all of us here do... Gorgeous Chrissy, all of you are in my thoughts and I know everything will be fine and you and Josh will make the right decisions. Avery is such a special little soul who touches so many of us 🥰 Her absolutely beautiful face just glows. I mean, wow, you've both passed on some extraordinary genes there! I'm sorry for the long post and my ramblings. Before I go... Avery will speak. Give it time, it may be 3 or so years from now, but it will happen. She's already trying to formulate words and she understands everything you say. A huge virtual hug for the little princess 🌺🤗 Wishing you all the happiness in the world. You deserve it!

[@mummyandavery]

your comment literally brought a tear to my eye 🥲 you’re so very sweet I appreciate your kindness and I’m so glad our videos lift your mood ❤️ you could be right we have no idea if the blends were the cause but we’re just at a loss in terms of knowledge so we just have to try different things and observe Avery. Shes doing better on the g tube feed but that could be because shes recovered from her illness. Only time will tell. Again I rally appreciate your words and I hope you continue to enjoy our videos ❤️❤️

[@smokindragon04]

Avery really looks like a sleeping angel👼

[@mummyandavery]

I agree 😃❤️

[@aimeesalter9521]

Love your sideboard awww poor mummy and Avery ❤❤ poor Avery bless her so scary ❤❤❤ ❤ aww hope you get things sorted with Avery stay positive I know it’s hard sending lots of love 💕 and hugs 🤗

[@mummyandavery]

Thank you ❤️ I really like to too 😊 me too, she needs a break xx

[@ck4599]

Your such an amazing mom. I love your channel ❤️

[@mummyandavery]

Thank you so much ❤️🥰

[@ck4599]

Boys looked so cute!!

[@mummyandavery]

Thank you 🥰

[@brandispry576]

I am so sorry things are so rough with Avery at the moment. I think you definitely have a great plan in place. Switching her back to formula feeds for a while to see if that helps prevent any aspiration pneumonia is a great idea. I think it would also be great if you could get her in to see an immunologist and see what her T-cell count is. My daughter has a 22Q chromosome deletion and was born with a very small thymus had low T cell counts until she was four. She had so many Hib vaccines because her body wouldn’t recognize the vaccine. I wonder if poor little Avery is not responding to her HiB vaccines as well.

[@mummyandavery]

Thank you ❤️ that’s really good to know, we have asked for a basic immunity test as Avery is due to have some bloods done soon. Her paediatrician has said the basic test should pick up any red flags for further testing if there is any xx

[@SGOB]

You are so strong and so is Avery! I’m sat here bolus feeding my little girl and I just wish I could give you a big hug! How is Avery doing? I saw on instagram that you have been in hospital. X

[@mummyandavery]

Thank you ❤️ as a fellow tubie parent you must know just how challenging it can be. Avery came home tonight, she’s doing ok she has a respiratory virus so her oxygen kept dropping when she slept, they were just about happy enough to let her finish recovering at home xx

[@SGOB]

@@mummyandavery I’m so glad that you are home and I hope Avery is feeling better really soon. I hope you manage to get some rest also x

[@mummyandavery]

Thank you so much ❤️❤️

[@jessicadry]

You’ve probably already considered this but you talking about her feeds got me thinking after watching your videos on what you’ve been feeding Avery for her blended diet and I wonder if you have researched into what foods are easiest to digest, I know that eating a banana myself is quite a bulky and bloaty food for me and it feels like it takes longer to digest, maybe with Avery’s reflux because it’s sitting in the stomach longer it’s aggravating it, I’m definitely no dietician and am just going on how my body feels when I eat certain foods, maybe it would be best to try very little and often so feeling smaller amounts every 2 hours with foods that are scientifically proven to digest quicker maybe or be lighter on the stomach. I’m sure you’ve tried or thought about this but I just thought I’d mention it because at this point I can see the devastation and heartache in your face and I feel like any kind input at all might help. Just know I can see you are doing your absolute best and you’re so strong! You and Avery have got this!🥰

[@mummyandavery]

Thank you for your input ❤️ I have considered this, banana was a favourite because I always found it difficult to meet her calorie requirements.. I think the same probably goes for a lot of higher calorie foods. Unfortunately more little and often feeds wouldn’t be ideal as Avery needs time for her food to settle each time, plus any nap she may take there would never be any time for her to play and do therapies. We’ve gone back to the compleat for now and she’s doing a lot better ❤️❤️

[@furryfreinds9063]

Iam sorry about the unexpected turn. My daughter had serious chest infection because of sever reflux and the doctors and us decided it would be best to have a fundipication and it saved her life but it was a long joirney after the surgery as your body has to adapt and is painful but it saved us. I am sending my best wishes too you and evryone in your family.

[@mummyandavery]

Thank you for sharing your story ❤️ we’ve discussed the fundo but I just don’t think we’re at that stage yet, it’s nice to hear it made such a big impact on your daughters life xx

[@furryfreinds9063]

@@mummyandavery i agree she is still so young and little and its alot to get through

[@ruebennomura9143]

I just subscribe and respect you vlog love this video you are take care of your kids

[@mummyandavery]

Thank you so much ❤️

[@a.life.reimagined]

Such a pretty baby❤❤

[@mummyandavery]

Thank you ❤️❤️

[@kelliestoneman]

My girlie was just like your describing! We ended up having to end her blenderized diet because she couldn’t take being bolus fed (too much all at once caused vomiting and aspirations over and over) there is a drug called Domperidone that really saved her and cut the vomiting down but then it was the delivery she couldn’t handle and blends are just too thick to go through a pump (oh how I tried!) so my kiddo is now fed by pump with ensure from 7am to 1pm due to not being able to be fed overnight due to aspiration chances (she can have water overnight but they’re worried that formula is too thick of a substance for her to cough out of her lungs if that happens) Also we spoke of a fundo but the problem is is if they’re a good “vomiter” they can actually break through it by force! And we spoke of a J tube but there are instances of the J tube migrating out of the jujeum (so?) and where we are it has to be replaced in a hospital with radiology and if it happens on a Friday evening they usually won’t call a radiologist in and will just admit and do iv fluids until Monday! But I’m for sure not a doc this has just been our journey so far!

[@mummyandavery]

We’ve just had similar discussions with a gastroenterologist. J tube is still an option for us but we’re going to give her a good amount of time with the new things we’re implementing like the g tube feed and tilting her cot slightly and see how it goes. Fundo would be a last resort for me because I know it’s irreversible, I’d worry it wasn’t done perfect and made things worse, plus Avery is definitely a good vomiter! Xx

[@janicehedley1006]

I understand Avery might have to go back to formula feeds and not blended feeds. Maybe the blended diet can reintroduced at a later age. Not sure how that would work with a "J" tube in place because I would think blended feeds could only be with a "G" tube. Fundoplication works well on lots of cerebral palsy children to prevent reflux. You worked so hard to introduce blended feeds to Avery and even though more work for you, you wanted to make her life more "normal". You were feeding her a healthy diet with the calories and amounts needed for her weight. Your poor family has been so sick for the past week and I knew you were coming down with a cold or virus on the last vlog. Wished you had someone there to give you an opportunity to have a nap each day while you are ill. Moms take longer to get better because we push ourselves. A normal mom thing. I pray that your family gets well soon and Avery improves in her health. Does your health system allow a respiratory therapist come into your home during the times Avery has respiratory issues? I am from Canada so I understand that UK would have different provisions for disabled children than Canada and the USA. Best wishes and hugs. You are doing great managing all that you do. Above and beyond.

[@mummyandavery]

Thank you ❤️ you’re absolutely right it takes me a good 10 days to get over a cold, my husbands always seem to be gone overnight.. typical 😂 we have a respiratory physio on board now, we know some positioning and patting motions to help clear her mucous and we’re still using her nebuliser xx

[@stuartphillips8308]

Hi there, I have a profoundly disabled daughter too and she had terrible reflux when younger. My daughter went on Lansoprazole and it pretty much stopped. Is your daughter on it? My little girl also is peg fed, has seizures and has re curring chest infections. I feel your pain xxxx

[@mummyandavery]

She’s tried lansoprazole and we didn’t see much difference.. her dystonia doesn’t help as it sets the reflux off. It sounds like you know exactly what our life is like. I hope you’re coping ok ❤️

[@stuartphillips8308]

Awww, it doesn't work for everyone. My daughter Rosie is 8 years old now, so we have had lots of emotional ups and downs, it's a very long journey but you will get there. Some times you will cope and other times you won't, but they are absolutely a gift from above😍😍😍😍 xxx Sarah Phillips xxx

[@wincharles1195]

Prayers

[@mummyandavery]

🙏❤️

[@dashaynaanderson8101]

My son's epileptic as well so everytime he gets sick with any small sickness he breaks out into convulsing seizures or fabrile it's horrible

[@mummyandavery]

It’s scary, did your son start with febrile convulsions or was he already epileptic? I know febrile seizures are quite common in small children but if it doesn’t evolve into epilepsy they can grow out of it xx

[@Carolineisthebest]

I’ve had 2 seizures and I am epileptic. I’m 14. I had one October 20th, 2021 and one November 24th, 2021. Actually November 24th is 1 year seizure free!! If I can make it one more year I can be declared seizure free and possibly get off of my anti seizure medication !!

[@mummyandavery]

That’s amazing ❤️ I really hope you do 😊 Avery has been on Leveteracetam since her event xx

[@SophieandBrogan]

Love you ❤

[@mummyandavery]

❤️❤️❤️❤️❤️

[@beeintelligent3259]

Covid jabs??? The younger that are getting jabs are having very unbelievable symptoms. I’m personally seeing it with 2 younger ones I know. But it’s in the numbers that are very concerning. I’m sorry to say this but it is the truth. 😢😢😢

[@mummyandavery]

I think the vaccines were rolled out so quickly unfortunately we are the Guinea pigs. My boys are fine after their jabs.. what we thought was side effects turned out to be RSV xx