Getting Sized For Specialized Equipment | Standing Frame, Bath Seat & Wheel Chair?

[@isabellajoyy]

This was filmed & edited before we got his heart surgery date which is 5 days from the day I’m writing this comment. Thank you very much to everyone for your kindness towards Denver & our family 🌼🤍

[@ZoeForeverReading]

Do you have instagram to get more realtime updates on Denver and surgery? Sending all my love to you and and wishing Denver all the best for surgery and recovery x

[@lisasprite3322]

Five days… You will all do great 🩵 Thought for you and your family. May the Surgeon’s hands be guided to heal baby Denver’s heart 💙🩵💙

[@lindsaya7733]

Thinking of you guys!❤️❤️❤️

[@danettedennis4852]

💙 🙏

[@emmasgrandma1]

❤

[@jessica_insightexhibits]

Don't give up the hope of Denver walking! Due to my uncle's disabilities, my grandparents were told that he would never walk, but with a lot of daily, consistent effort from my grandparents and other family working with him, he was able to not only walk, but run around and play like a normal kid. Miracles happen! I'll be praying for Denver, the doctors, you, and your family ❤

[@isabellajoyy]

Thank You for this amazing story about your uncle! this is so uplifting! 🤍 Yes I see Denver trying so hard already to do things that others have said might not / would be very hard for him to do! Even with this weight gain I'm seeing him stronger & trying more & more every day! Thank you so much for your prayers 🤍

[@Valerie__22]

You are amazing in the entire understanding of your son’s medical needs, and are even sounding like the most intuitive, caring doctor that anyone could wish for. Denver is so very blessed with you for his mom.

[@dollfactory]

Bella, I'll be praying for strength and a speedy recovery for sweet Mr. Denver! I love his little face and those big soul full eyes! He's such a cute li'l guy 😊

[@isabellajoyy]

Thank you so very much! He smiles with his eyes which makes them even more adorable! 🥹🥺

[@Snakedad1991]

What a cool little dude! Love him standing 🎉

[@isabellajoyy]

Thank you!! so awesome to see!!

[@gailathomas5218]

Denver’s smile will melt any heart! Prayers for a safe and successful surgery!🙏🙏🙏

[@isabellajoyy]

THE best smile! he's always smiling at all of us, just warms my heart 🥹 Thank you for your prayers!

[@Marzipana1]

The big brother is wonderful, cute and patient. It‘s always hard if everybody cares only for the baby, especiallly for one with specialneeds. It‘s good to have him involved, good job mum.

[@isabellajoyy]

Thank you! Draven really is such a good big brother & we try to balance everything and keep him involved because i notice such a difference 🤍

[@heathertesoriero2107]

Denver is such a dear little boy. He is so alert and knows exactly what is happening. I hope his surgery goes well. I will watching for for your posts on his progress. Love from Melbourne Australia and love to your other son draven 😀💝🌹

[@isabellajoyy]

This last few weeks he’s been so alert and responsive, it’s been so amazing to watch 🥹 thank you so much I have maybe 2 videos I’d like to get out before his big day 🤍 thank you millions for watching & supporting 🤍 Draven & Denver are just little sweethearts !

[@Mandy-dw6ds]

You are such a loving mom,your kiddos are lucky to have you. I pray he gets all the special equipment he needs, and that his surgery goes perfect. Such a sweet little boy.

[@isabellajoyy]

Thank you so very much! We are hoping we can get one home for him quickly & make him more comfortable after he is home and recovered 🤍

[@reneemansini7687]

Prayers for your beautiful little nugget ❤

[@isabellajoyy]

Thank you very much! ❤

[@janicemiller3144]

I love to see Denver smile it warms my heart

[@isabellajoyy]

Thank you Janice !! 🤍🤍🤍 such a precious wholesome smile 🥰

[@user-mp4zs2by9m]

Prayers are with all of you. Believing Denver’s surgery will be successful. ❤️

[@isabellajoyy]

Thank you so very much! I know Denver will be in good hands with a Dr that has seen something similar at least 2 separate times! i couldn't have asked for a better outcome for him! 🥰

[@DevonLass]

We love Denver. And Draven. You are such an amazing mum. Sending lots of love from England 🇬🇧❤️

[@isabellajoyy]

Thank you very much for watching our family! it means so much to us ! 🤍

[@girlfromsouth214]

When he was sitting your lap, I can really see how Denver has grown so much and gotten so much stronger since your first video I watched a couple of months ago! And, he's so expressive with his adorable little grins and noises. He looks so proud and sweet using the equipment. ♥

[@isabellajoyy]

🥹 thank you so much, I’m so happy it’s showing how strong and happy he is getting. This weight gain has been amazing for him lately, he is staying awake longer & trying hard to reach some milestones on his own! He makes very unique noises , I could find Denver in a large group of people easily haha he has certain sounds for certain things and I’ve really learned to hone in what he’s after haha . Yes so happy! we were able ti take the blue seat home & he loves being high up when we are playing with him!

[@misszsazsa6288]

Hi Isabella! Denver is absolutely 💯% beautiful! The Manatee really does look very comfortable so I think you're right about it being useful as a little lounge chair during play time and throughout the day. The look on his face when the stander started rising? Priceless! It good for him to get the chance to put weight on his feet (even though he isn't keen on it) because it helps build stronger bones with greater density. The denser the bone the more likely they are to to break and conversely, the less dense, the easier to break during movement. In school, the students we had who were not able to walk (full-time in wheel chairs) were always put in their standers or their standing walkers to allow them to do some weight-bearing for their bone health. Denver is just a sweet little treasure and I love how you and your husband are working so hard to get the proper resources in place for him.

[@isabellajoyy]

The manatee is one of our favourites for him and he loves it!! We actually got a prescription for AFOS yesterday and hoping to start the process soon 🤞🏻 we pick up his stander on august 29th after a long wait and can’t wait to see how he does. Thank you so much for your kindness, I never knew that about bones, but it makes sense, and I’d love to have him be up with us also 🥳 seems like so many benefits I can’t wait to get it for him 🤗🤍

[@vippiggygirl8926]

You and your family are amazing strong. From one mum, to another your amazing 👏 My daughter only has about 2% of what your facing, and some times I find things hard. Total Respect 🙌

[@isabellajoyy]

We walk this road together! it's so hard watching your little one going through anything 🤍 I hope you and your daughter are doing well

[@dianahurd3353]

Denver looked great upright and your voice portrayed how proud you were of him to adapt so quickly to that position. I will be thinking of you all as he goes through his heart surgery which I know will be a frightening and very stressful time for you but with the skill of the surgeons and the love of his family and friends will see Denver continue to thrive and develop. X

[@isabellajoyy]

Thank you so much 🤍 we have been in pre admission all day learning about the process & exactly how things will go and we are confident he will feel better 🤍 tomorrow is his big day 🤍🤍

[@Jane42.]

All the best for Denver's surgery. Love to see him smile! And I think the wheelchair is a great option. There are many ambulatory wheelchair users, so he can use one when needed and walk when he feels able. My kiddo (hypermobile, but not Marfans) uses his mobility aids when he knows it will be a longer day or if he is feeling bad, and goes without the rest of the time.

[@isabellajoyy]

I think that’s exactly what would work for Denver ! Just to aid him if need be, I know big walking days can be hard on even me so to have that for him would be awesome 🤍🤍

[@jansuzanne]

Love all your updates Bella. Hoping that all the new equipment and surgery will be beneficial for all of you. Denver is getting to be such a big boy. It was also nice to catch a glimpse of Draven in the video clip as he patiently watched his baby brother be fitted for his new equipment. You are becoming so knowledgeable on so many new issues. 😊❤

[@isabellajoyy]

Draven is so incredibly patient & loves to watch Denver do his appointments 🥹 The best brother 🤍 Denver has grown 2 lbs since continuous feeds & getting so strong. this surgery will just make it even easier for him and I can't wait to see him feel better 🤍 Thank you so much !

[@voicesinyourhead4204]

I am stunned at how much Denver is progressing!! Amazing

[@isabellajoyy]

It's been so miraculous this last month!! His weight gain is making him overall happier and have more energy! i'm so ecstatic about it 🥹😃💪

[@jacintasalt8731]

Sweet little soul! Big boy in his stand. He and Drayden are champs in this situation. So glad to hear about the surgery date.

[@isabellajoyy]

He's so incredibly patient, so much like his dad that way 🥹 Doesn't Denver look so big in his stand! I can't wait to take one home for him. 🥰

[@lmccauley7319]

You're a really good mom. Praying for you and Denver.

[@isabellajoyy]

Thank you so incredibly much 🤍🌼

[@tinas2597]

Great job, Denver. You did so well standing. Love this little guy!♥️ Love & prayers!

[@isabellajoyy]

He is getting so strong!! Thank you so much! 🤍

[@thehattersmadness1957]

He is so alert and cooperative. Loving the new equipment. You definitely need to get the ball rolling because it is a process that takes time. His little face tells it all. So happy that you got the doctor you have faith in. Definitely his cardiac output is low which causes problems with breathing and O2 levels which leads to low energy and decreased activity tolerance. It’s coming fast. Thoughts and prayers are so with you all. You got this!❤😊

[@isabellajoyy]

Yes, that seems to be exactly it! At the same time, Denver will also be getting a diaphragm surgery & pectus surgery which should help open his lungs so I hope that all this combined will help with his O2 levels as well! Sounds like wheelchairs can be years to actually get after you start the process so seems like the earlier the better on the approval side of it all 🤍

[@MandaLynn5346.]

Awww, how exciting! Loved seeing him standing. He will walk as long as he has a family like yours to keep believing in him. I can't get enough of Denver. I may be speaking for not only myself but others, but some of us would love to help your family. Is there a way we may contribute to Denver's journey? If not, I understand but it was just a thought. I see all the love your family is getting and it is inspiring! #GoDenver #DenversArmy

[@isabellajoyy]

These hashtags made me cry 🥹 I love Denversarmy 🥹🥹 thank you so much ! Just you watching, commenting supporting is so much help, truly 🤍 it’s helped grow this group of amazing & kind people behind us, and I feel the love 🤍🤍 thank you so very much 🤍🤍

[@ericaevoy1]

Denver’s face when they put him upwards 😂 his eyes and forehead were so concerned. Love sent as always 💖

[@isabellajoyy]

I got a few screenshots of the video I sent to my husband and they make me melt hahah it was like he was smiling but trying not to show us how he was really feeling haha 😂

[@lisasprite3322]

Draven is such a sweet big brother 💙💙 You are doing great!!! So many smiles. You articulate very well all the med chat. Great watch. Best for the w’end x

[@isabellajoyy]

He is so patient & understanding during appointments it's remarkable to me even. 🥺 Thank you so much, so cute seeing Denver happy lately! This weight gain has made him SO happy & I cry happy tears just seeing it 🥰

[@cityflyer12]

Hi Bella,hope the insurance can help Denver out,he’s such a sweet little boy

[@isabellajoyy]

Our insurance company switches over in July so we are hoping the new company will approve it 🤞Thank you so much 🤍

[@danielacoarda2655]

How can he be soooo sweet? He is a miracle baby and hes got the best mummy he could wish for🥰🥰🥰

[@isabellajoyy]

Thank you so very much 🥹🥹 he is so loved 🥰

[@marianne57]

Denver is an adorable little boy. He definitely was trying to figure out his new standing equipment. He was very alert. Bella you have beautiful hair. Prayers for Denver’s upcoming surgery. ❤️🙏

[@isabellajoyy]

Thank you so much for your kindness 🥰 He has been very alert this last month and really working on his milestones! I love to see it! Thank you again for your prayers as well 🤍

[@robynkimball4059]

You are an awesome mom, and you were meant to have him❤

[@ailsamallison3061]

I love the look on his face when the people were putting him in his stander was priceless

[@isabellajoyy]

“What the heck is going on mom “ hahah looking around like he didn’t know what to think lol

[@lorimangus1233]

Him and his brother are adorable..Your blessed to have such sweet kids.. God only picks the best to give special kids to...

[@kerijones5580]

Prayers for you and Denver, also for the drs and nurses taking care of him.

[@isabellajoyy]

Thank you very much, I truly believe my husband and I were meant to be his parents 🤍

[@isabellajoyy]

Thank you very much! 🤍

[@kerijones5580]

@@isabellajoyy he couldn't have picked better❤

[@LeftOfToday]

Oh boy, I'm here early! Look at him holding and tugging that strap so well!! And that chair looks so comfy; I didn't realize it was for the bath at first. I wonder if a chair like Sebastian's would be helpful/comfortable for him? They also have special needs strollers, even up to adults, fwiw. Given his age that might be more realistic than a wheelchair for awhile? Kudos to Draven for doing so well through that appointment, too... At least it seemed that way! And great to hear that his surgeon has experience with children like Denver... Thank goodness! 🌈

[@isabellajoyy]

When I saw Sebastian chair I thought it would be perfect for Denver also! Sebastian’s syndrome makes him petite where as Denver in a few months be taller than his older brother because his makes him very tall ! I showed my pt the chair actually but she doesn’t think he would fit in it for long :( I agree I can’t even imagine Denver in a wheel chair this little, so when she mentioned she wants to get him fitted for one it took me back, I guess it’s a long process to get one approved & sized here so she thinks getting the ball rolling soon would be good.. I would definitely be interested in a special needs stroller when he outgrows ours, I think it would be more realistic 🤍we really did luck out with our dr, the mom who’s son had the same dr said he is amazing and that brings me so much comfort 🥹🥹🥹

[@LeftOfToday]

@@isabellajoyy Oi, that makes things difficult if the wait time is long for a wheelchair, but then how can they size him if he's growing so fast as is? Perhaps your pt can clarify next time, and that's wonderful that you're in contact with another parent who shares knowledge of Denver's condition.

[@isabellajoyy]

@@LeftOfToday right ?? I agree seems so early, guess we will see how that process goes! We were supposed to meet up July 4th but I had to cancel as we will either still be in the hospital or it’ll be too soon after Denver’s surgery to do anything big like sizing etc. I’ll definitely update on the process 🤍 🤍

[@andreita8583]

This is a beautiful video my brother has a lot of health problems so i admire anyone that tries everything they can for their loved ones ❤

[@isabellajoyy]

Thank you so much! It is so hard to watch loved ones go through health problems 🤍 I hope your brother is doing as well as he can be 🤍

[@Margkou]

I pray for Denver to have a speedy recovery ❤

[@isabellajoyy]

Thank you 🤍🤍🤍

[@ailsamallison3061]

He is sooooo adorable. All the very best for his op ❤

[@isabellajoyy]

Thank you so much!! 🤍

[@zerolightness6674]

You are doing avgreat job with your son! ❤He has alot going on and you are doing everything that you are supposed to and helping him. You are a young mom with a full plate❤. Great job Denver looks happy ❤ and will be fine.❤

[@isabellajoyy]

Thank you so much! I feel so much better about surgery now that he has gained weight & is getting stronger 💪🏻🤍 thank you so much ! He’s the light of our life & makes everyone around him so happy 🥰🥰

[@valeriespatorico4346]

❤ OMG He is just the most precious little guy ever!

[@isabellajoyy]

He really is THE happiest baby! so precious 🥰

[@cynthiabishop3836]

My granddaughter had to have her whole aortic arch replaced, and had a band put on her pulmonary artery at three days old. She only weighed 4 lbs, and the smallest instruments the children’s hospital had were for children who weighed 5 lbs. ,but she had to have the surgery to stay alive. She was on a ventilator and in ICU for quite a while after surgery, but the repairs went well. So Denver’s large size may be somewhat of an advantage for surgery. They knew my granddaughter would need more heart surgery later, but said they would really like to get her to about 14 pounds to do it, because larger children bear the surgery better. Best of luck that everything goes well for your precious boy.

[@isabellajoyy]

Denver is officially 16 lbs which came just in time for this big day!! Does your granddaughter have Marfan Syndrome as well? I am so happy to hear her repairs went well !

[@cynthiabishop3836]

She has Shone’s syndrome. It is a group of heart defects which includes a severe narrowing of the aorta, a problem with the pulmonary artery, a malformation of the mitral valve, a small left ventricle, and (in her case) four holes in her heart. She also had such severe GERD that she had a g tube for feeding and a surgery on her stomach to help tighten the bottom of her esophagus. She had a lung problem which required surgery. Her pituitary gland does not work properly, which caused a severe slowing of her growth. Her tonsils and adenoids were not properly formed, which caused sleep apnea, so she had to have them removed. She had very low muscle tone. Sadly, when she was 15 months old she got an infection that spread to her bloodstream and caused her heart to stop. It took a long time to get her heart started, which led to a brain injury. The doctors told us that, if she lived, she might have “ no meaningful neurological function”. Well, they were wrong. She sat up on her first birthday, started walking with AFOs at two and a half. She started talking before she was three. The endocrinologist started her on growth hormone to help her grow. Today she is eight years old, goes to regular school (she does get math tutoring to help some), is still tiny but keeps up pretty well with her peers. She does have ADHD, but it is well managed. She is a dancer ( in a company she had to addition for!). She reads well, speaks normally (and constantly!), and is a happy, curious, loving child☺️. She wound up having six surgeries, many, many hours of PT, OT, feeding therapy, and speech therapy. Isabelle, at one point we were told to say goodbye to her because she wouldn’t live through the night. Another time we were told that her life expectancy was about six months. This is why I urge you not to despair when you get bad news about Denver. Granted, we were very fortunate with Norma, and not everyone is so lucky. However, Denver may be the exception to the rule, just like Norma. Even her cardiologist says that he could never have believed that her outcome would be so wonderful .Someday, Denver’s doctor may say those words to you. I hope and pray that he does.

[@corkipollock7483]

I loved seeing those clips of him…he did so good, in his standing thing❤❤ thank you so much for sharing his story. I am getting pretty attached to him!❤❤. Can I say, again, how beautiful you are…and your hair is gorgeous ❤

[@isabellajoyy]

He steals the show right? 🥹🥹 his smile & happiness alone I could watch on repeat 🥹 thank you so much for that compliment 🥰🥰 made my morning reading this

[@erinharrison6968]

He is so absolutely precious!!!! ❤❤

[@isabellajoyy]

Thank you! 🤍🥹

[@martinemikita9281]

Ur channel came up on my feed!!! I am NOW subbed with the bell on!! Also... Ur the most beautiful natural real life Mom and I love it!!! ❤

[@isabellajoyy]

Thank you so much!!! 🥹🥰🤍

[@dasbingele6889]

I keep my fingers crossed for the surgery and send greetings from Germany. 🍀🫶

[@isabellajoyy]

Thank you so much!! 🤍

[@GracietheFrenchie]

Denver is so cute. I love seeing your videos. Sending love from North Carolina

[@isabellajoyy]

Thank you so much for watching! 🤍

[@pennyp7382]

He looked like he wanted to grab her pretty dangle ear rings 😆. Denver you are so strong. Bella Mama 🐻 🫂. Great job big brother and Denver. 💐 🌹 🌸 🏵 🌼 Your boys are precious. ❤Cheering you all on! 🎉 Hang in there. Stay comfy and know you are supported. You aren't alone in this. 🫂

[@isabellajoyy]

Oh dear probably a good this he didn’t do that haha 😆 thank you so much! Tomorrow is his big surgery day 🤍

[@karaokequeen1565]

He is just so adorable 😍

[@isabellajoyy]

Awe thank you!! he's so sweet 🥹🌼

[@brendawalker7290]

He is just precious

[@isabellajoyy]

Thank you! such a precious, happy baby !

[@verily360]

Ah bless him,he is adorable.

[@isabellajoyy]

Thank you very much! he's such a sweetheart & so very alert lately 🥰

[@mollymackiewicz6965]

Praying for Denver! Father we need a miracle. You are a miracle working God! Thank You and Praise You for what You are doing🙌❤️

[@isabellajoyy]

Thank you for your kindness ❤️

[@amyt6254]

Hi, Bella! Hi, sweet Denver!

[@isabellajoyy]

We both say hello back! 🥰

[@justmejo9008]

Denver is like “Who are these people and what is this sorcery” 😦 … so cute

[@isabellajoyy]

Right !? Like standing is something he’s never done , so I’m sure this was such a different feeling for him !

[@candicesailsbury1355]

I bet he thought wow I’m standing up 😊 He’s such a cutie 🥰 I think I’m in love 😍 He’s in my thoughts and prayers

[@isabellajoyy]

He definitely was haha he was so curious about what was going on! He is so happy even when doing things that are "uncomfortable" especially since it is his first time doing something like this. He does so well!! Thank you very much!! 🥰

[@bettygann]

you are such a great mom you are handling everything so wonderfully,Denver is so lucky your his mom at your age I was still a scatter brain LOL and you have beautiful hair and your so pretty please know people care reach whenever you need to have a good day.

[@isabellajoyy]

Thank you very much Betty! it means so much to me that you watch and care about Denver & our family. Brings us so much joy to know we have people rooting Denver on through these tough days ahead 🤍

[@bettygann]

@@isabellajoyy 💕💕♥♥🥰

[@theclarks2856]

I apologize because this is so off-topic of your sweet little man, but you have AMAZING HAIR 👏 💙 I always admire it every time i watch your videos.

[@sarahdore7884]

I said the same thing in a recent video! It’s gorgeous ❤

[@isabellajoyy]

Ahhh that is so kind 🥹🥹 Thank you! 🥰

[@isabellajoyy]

🥰 you're the best 🥹

[@Joy21090]

1:01 - his bath chair looks like my beloved anti-gravity lounger! SOO comfortable! A lot of good news happening there. Loved how he did in the stander. That's just stellar. With prayer from Rhode Island! Esther

[@isabellajoyy]

I agree! it is like a sun lounger ☀️ They were impressed with how long he was in the stander, especially for his first time 🤍 Things are rolling so quickly!

[@jfro3685]

We had orthopedics out today to get my mom fitted… it’s going to take sometime before we received her AFO’s tho.

[@isabellajoyy]

I had no idea they took that long! Glad we are getting the ball rolling 🤍

[@jelenasekaric1471]

Dusa mala❤😊

[@cottontailcameo]

I have a dilated pulmonary artery because I have pulmonary Hypertention. I am no longer on day time oxygen but still need it at night. You will be in my thought for a very successful surgery!

[@isabellajoyy]

That’s good to know ! It was only the last few month echos I have heard his MPA is severe and now will be operated on. Are you on medicine to help with it? Or have you had a procedure done ? Thank you for the well wishes 💖💖

[@jessicashlager7193]

I would agree that he would benefit from AFO's, wrist splints and a standing frame. He might walk one day but a wheelchair would help him now and ultimately give him freedom of movement if he is too tired to walk (for the future).

[@isabellajoyy]

You are totally right, I think the stamina i the biggest reason they mentioned it would be a great option for him 🤍 I absolutely would love to have one to make outings easier on him 🤍

[@anniegajdosova]

❤❤❤❤I love him

[@isabellajoyy]

He’s such a sweetheart 🥰🥰

[@lindsaya7733]

I feel like the new tools will improve Denvers life and make it easier for you to care for him. I hope you can get them quickly and with insurance! It seems like such a sin that filling medical needs can be cost prohibitive. I mean, I suppose he doesn’t NEED a wheelchair, but how can the government/companies put a price tag on the quality of someones life? As you said, it could help a great deal as he works on his muscle strength. I know you are in Canada and things are different, but here in the US it is awful. Anyway, rant over lol. As usual, he is a super cutie. ❤

[@isabellajoyy]

That bath chair we got was $900.00... luckily we didn't pay full price, but the only reason it is that expensive is that they know insurance or funding etc with pay for it... seems unfair. I was shocked when I saw the standing frame quote. it went up 40% in price in 2023 from previous years. We didn't even get a quote for a wheelchair yet but I am assuming it's along the same high price tag. I agree this sparks a bigger conversation hiding behind this all. I hope this isn't something you have had to deal with because it is so eye-opening... We miraculously were able to get one for rent that just opened up but I had to cancel the appointment we booked to properly size & pick it up since we will be at the hospital after Denver's surgery... Hoping that we are still able to grab it if it's available when we come home 🤍

[@clairebear1808]

Hi Denver ❤

[@isabellajoyy]

Hello 🥰

[@LoveMyBoys3]

Sweet baby!

[@isabellajoyy]

Such a sweetie 🌼🤍

[@chelsguillot9311]

Thanks

[@isabellajoyy]

Thank you so much for this, it is incredibly kind 🥹🥹

[@hixxyted1244]

Denvers beautiful eye's hes Going to be a handsome chap

[@isabellajoyy]

Thank you so much 🥹🤍

[@EjaBe23]

Denver’s hands are so delicate & beautiful with his long fingers. Have you tried making a plaster cast of them? If I were you, I think I would love to have them. I’m not sure about this other idea I have -whether it could be done-perhaps while he’s asleep? This is making plaster casts of this hands-3 dimensional. What wonderful keepsakes!! You should do the same with your older boy, Darian (sp) at the same time. I hope you can try these ideas on your less busy days-most probably when your husband is home! You are lucky he wants to have “hands on” with his boys ! You need those bits of breaks. Being a mother is the hardest “activity/thing ” I’ve ever done. Before becoming a Mother, I graduated from college and continued my education on to earn a law degree (JD) and an MBA in business. I then made sure I “passed the bar” in Kansas before deciding to get pregnant and become a mother! Golly, it was hard. I remember the goal I set after our first son was born was to get the dishes done and dressed before my husband came home. Luckily, he worked normal daytime hours. Then, 2 years later I delivered a second son. They were as different as oil & water and practically never played together. Our older son crawled & walked late and always preferring to not move much. If the ball rolled away, he wouldn’t bother about moving to it, but would occupy himself with something he could reach. This boy was so curious about everything, always wanting to open cabinets and see what was behind the door or opening drawers to look what was inside. He took everything out. After a bit with something, he’d go on to the next interesting thing. Our second son was on the go all of the time. He would pass by the cabinets and drawers, never feeling the urge to wonder what was inside. He was into big motor skills! He was more social and liked to play with others.. Our daughter was born at home-we had to call the fire department! She was tiny at just 5# 2 oz because I had toxemia. Therefore, my placenta was not as efficient because of the high blood pressure. She came 2 weeks early-Mother Nature knew she needed to be born, although I was passing non-stress tests at my doctors. She was fine, just small and never lagged behind in development. Our children are now turning 38, 41, and 43 this summer!! We made it, with the days some times dragging, but the months & years flying by. I admire you and the many things you are able to accomplish each day. When my husband was home, I liked going to the grocery store by MYSELF and mowing the lawn, however I never was able to start the darn machine myself. So hang in there and everything will fall into place with time. You will look back and wonder how you were able to accomplish so much each day. By the way, our 3 children, although out of the house, still sometimes need my advice. You will always be a Mother, just the chores change. Take care of yourself! I will continue to follow your vlogs and watch you and your family move through life. 😘

[@isabellajoyy]

Maybe I'll see if the wiggly boys would be able to do that! his hands are so unique, i did take hand prints as keepsakes though! Wow, what a strong MAMA to do all that alongside motherhood! Seeing differences in children & their likes, dislikes etc is something I have loved noticing their own little person forming!

[@inesdelong5896]

How did she get like that?

[@isabellajoyy]

He was born with a rare condition, called neonatal Marfan syndrome. It greatly affects the heart, and he just recently had surgery three weeks ago to help fix it. It’s aggressive and we are working closely with his doctors to give him the best chance at life possible.

[@susansollee1839]

🌻👍🏻❤️

[@isabellajoyy]

🤍🌼🥰

[@darleenmccauley8220]

The wheel chair would be great to have for distance activities. Since takes so long get equipment. His condition going to improve so much after surgery. Wont be as short of breath on excertion and stamina will increase. Better have equipment on hand . Kiss for sweet Denver

[@isabellajoyy]

I completely agree ! It’s quite a long process so will be nice to see how much stronger he gets before we actually get the wheelchair 🤞🏻🤍

[@anjasmaal605]

In the Netherlands we have strollers for children with a handicap, that are too big for a normal stroller and too small for a wheelchair. It's the insurance or government that give you these things or you can borrow them or rent them. Doesn't that excist in the US or Canada? As parents of a handicapped child, especially when you are a stay at home mom, finances will not be sufficient to purchase all these things.

[@isabellajoyy]

No one has ever mentioned how the program works for special needs strollers but I will most definitely ask as I think that would be a lovely option for us :) We are in Alberta, Canada & here we either have to pay outright for a standing frame or pray to get one in rotation :( Which they mentioned could take a while so they wanted to see what our insurance would cover! I agree it really is expensive & this is very eye-opening.. the bath seat we got for Denver was $900... Thankfully we didn't have to pay full price.

[@biddiemutter3481]

Even if he does get a wheelchair, it doesn't necessarily mean that he will need it all the time.

[@isabellajoyy]

I agree 🤍

[@Jennygeee]

Does the US not supply equipment for children free of charge? Thankfully it is free in the UK but I’m so sorry if you have to pay yourself. Have you thought of a GoFund?

[@GeorginasJourney]

Hope you don’t mind me replying, but the U.K. actually doesn’t supply much medical equipment for free for kids (or adults), that’s why we have Children In Need in the U.K. to try to help families with medical stuff as we don’t really have the insurance options that other countries have to fall back on & uk average wages are much lower than the US average (£26K/year vs £39K/year), so families can’t pay for it privately in a lot of cases. However, I know that a lot of people in the US still struggle & do I was going to suggest a GoFundMe too, as I’m sure there are a lot of us here who would be happy to help Denver get his AFOs as soon as possible! 💗

[@isabellajoyy]

We are in Canada :) for standers you either have to pay for one yourself or pray you to get one of the rented ones in a rotation that the government helps partially fund alongside some money from us 🤍 my sister is coming up this weekend to wish Denver well before his surgery & was going to see her thoughts on a go fund me & if she would maybe organize/ host it if she was comfortable. I have mixed feelings about asking for anything 🥺 and You learning, watching & supporting Denver & our family is truly more than I could ever ask for, so just want to say thank you 🥰

[@isabellajoyy]

Thank you for educating me on what it is like for equipment in the UK, seems similar-ish to here in Canada a little bit. I can't believe AFOs are as expensive as they were telling me, and with Denver having longer feet/limbs he will outgrow them more so they seem to believe. Do you have/ had AFOs Georgina ?

[@GeorginasJourney]

@@isabellajoyy I laughed out loud reading that you’re in Canada- my mistake sorry! I’m so guilty for assuming everyone is in the US, sorry again! Please don’t feel guilty if you create a fundraiser, this is a very valid reason to start one and as you say, it will/could be an ongoing cost for Denver with him growing so fast! I don’t have AFOs myself as my ankles are my better joints thankfully, but I do use other braces 😊 One thing I was thinking about when Denver was standing was that in people who can’t walk & particularly in people with connective tissue disorders, our heart rate & blood pressure can change & make us feel dizzy, & possibly in Denver’s case, his oxygen could be affected too, so that may be something to consider when you get the stander, you may be able to tell how he’s feeling based on his smiles & stuff, but if not, you could take his heartrate and oxygen reading to gauge how he’s doing & might be feeling 😊 blood pressure is a bit more complex as if he seems happy, I probably wouldn’t put him through the discomfort of a taking BP readings unless that’s part of his day to life anyway :)

[@isabellajoyy]

I always assume everyone is I From the states also ! Then I get so excited when I find out they are from Canada for some reason if they are lol the U.S always seems to have more stuff than us here :( great point about the dizziness etc , that really never crossed my mind !

[@cottontailcameo]

Does AIDS to Daily living help cover the cost of the standing frame.

[@isabellajoyy]

In Alberta if you have a child with a disability and are I believe are also approved with a program called family support for child with disabilities ( which I heard is a 18 month wait to be accepted and we aren’t yet.. ) they will help you get a rented one which can be hard to get :( but we actually just got a call that one opened up but we won’t be able to get it since Denver will be still in the hospital for the fitting & pick up date . I’m not sure if that will go to another person on the wait list now instead 😬

[@emitchell927]

If I may you can live a full life in a wheelchair

[@isabellajoyy]

Wasn’t saying you can’t , & definitely didn’t mean to make it sound like that so I’m sorry if it came up that way 🤍 it was the first time someone said that to us about Denver and I did naturally have emotions about it 🤍

[@jadebrainiac3135]

i was so confused! lol i read your comment after watching the video. my thoughts are still with you guys, i imagine you must be crawling out of your skin with all different feelings... but it's going to be all good, and so much better for him. (p.s. i think this type of video could have a few segments of it made into cool "shorts" like i mentioned the other day) edit: I just saw the short you have up already it's awesome! 💛🐥💙 🐳🩵💦 🤍🪸🧡

[@isabellajoyy]

A short of him smiling in his bath chair would be soooo cute 🥹 I've actually been trying to learn how to make a short as we speak! The only way I know how is to make a TikTok first and then upload it here, but I'm, not a big tiktok user either haha I have to have my younger sister come & show me the ways this weekend.