Stay At Home Mom Morning Routine│Special Needs Baby & A Toddler

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  • čas pƙidĂĄn 21. 04. 2023
  • Welp, this is always hard to film when you have 2 little ones needing you - but I tried my best to show you how our day goes in a nutshell. I was a stay at home mom with my first & now with our little Denver it has only solidified this is exactly where I need to be. Thank you for your kind comments towards Denver & our family!!
    Links to some of our faves:
    🇹🇩: www.amazon.ca/shop/isabellajoy
    đŸ‡ș🇾: www.amazon.com/shop/isabellajoy
    Track: Parcels
    Music composed and recorded by Oak Studios
    Creative Commons - Attribution ND 4.0
    ‱ [No Copyright Mus...

Komentáƙe • 136

  • @vivianunger9123
    @vivianunger9123 Pƙed rokem +27

    Yup, agreed, I get mad at the Moms who pretend they never have a bad day... and the ones who only brag about how great their lives are. They are lying.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +8

      they are definitely lying. This isn’t all sunshine & rainbows. A lot of people only show the good, which I get, but that’s not real life

    • @vivianunger9123
      @vivianunger9123 Pƙed rokem +4

      @@isabellajoyy I'm with you my sister, there's no way everyday is butterflies and rainbows -- no way! My cousin with 4 kids in Long Island NY does nothing but brag about her great life & " great village" helping her. She couldn't even do it just herself, without the "help" she gets..

  • @EmsLionheart
    @EmsLionheart Pƙed rokem +7

    Denver loves his mama so so much đŸ„° 😍

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +2

      He’s a mamas boy, I have to admit haha đŸ„čđŸ„čđŸ„č but when dad comes home from work he always gets so happy, it’s soooo cute đŸ„čđŸ„č

  • @sage3399
    @sage3399 Pƙed rokem +17

    So happy that you have the counseling calls to look forward to.
    I can only imagine how worrisome it is to believe that your child is in pain and you don't know why or what to do to relieve him of it.
    Your home is lovely and you seem to have a great schedule that works really well for you.
    Isabella.... you are a very good Mom. I am so glad that you and your husband have a strong relationship. That benefits your 2 boys immensely. :-)

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +2

      Thank you for watching đŸ„Č I feel my vlogs can be so boring, but I can tell you watched & that made my day đŸ„č the hospice counsellors are amazing, I am so happy we are connected with them. Thank you so much for your kind comment ❀❀❀

  • @marialauraavila2050
    @marialauraavila2050 Pƙed rokem +7

    Isabella! You’re doing amazing!!! Your kids look extremely happy and that’s all because of you and your husband! Loved how your oldest smiled at you while he was seating and eating his breakfast. You’re so strong!!💕💕

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      Thank you for your kind comment!! Draven is such a sweet boy & amazing big brother. Denver has such a tender soul and I am so happy that it is shining through the camera

  • @taay333
    @taay333 Pƙed rokem +4

    Aww at the beginning his sweet little hand reaching gently for your curls đŸ„č😍.
    Just found you. And I see you mama. You’re doing SO good. And you have 2 precious and beautiful little boys that I can tell you love with all of you. You’re doing the best with the hand that’s been dealt. And your best is damn impressive.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +3

      đŸ„čđŸ„čđŸ„č he melts my heart , he has really been teaching out lately and I love it. Thank you very much đŸ€đŸ€

  • @sasharix8685
    @sasharix8685 Pƙed rokem +7

    Don't forget you are doing great Isabelle xx ❀

  • @originalgifted7226
    @originalgifted7226 Pƙed rokem +6

    Just found your channel already love your momentum. Knowing it’s not easy, but you are doing great. Take one day at a time❀❀❀sending loves and prayers🙏🙏🙏

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      You are so kind ! ❀ thank you for your prayers

  • @Snakedad1991
    @Snakedad1991 Pƙed rokem +5

    You’re beautiful, and have a beautiful family! Those two boys are very lucky to have you ❀

  • @suewomack5960
    @suewomack5960 Pƙed rokem +2

    you are a beautiful woman and mother, inside and out. my prayers are with you, hubby, n those precious babies❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you sue for your kind words đŸ€ your prayers are so appreciated ❀

  • @lauriewromar5478
    @lauriewromar5478 Pƙed rokem +7

    Hang in there girl.
    And be proud of your momentum.
    That’s one beautifully clean home you keep! I only have one little to care for, and I still can’t find the time to shower every day 😱
    Your productivity is admirable!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      I feel you!!! Oh yeah showering is hard with kids , I used to wash my hair everyday, now it’s not so much 😂 i keep a relatively minimal house compared to most so it’s a tad easier to clean , but I’m still chasing after the toddler with our vacuum daily haha, not all rooms are clean , just the main ones mostly. I do need to scale back my expectations some days especially in the summer since I just want to be outside đŸ€đŸ€đŸ€

    • @dollfactory
      @dollfactory Pƙed rokem

      ​@@isabellajoyy 😊😊😊

  • @elisabethsphilosophy6459

    I love your channel! You are a great mom! And I wish you and your family all the best!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you so much đŸ€—đŸ€ that is so kind !

  • @denyshamarshall613
    @denyshamarshall613 Pƙed rokem +1

    Such a sweet family. Your so strong. Love your beautiful house by the way đŸ„°

  • @BeccaNeitman
    @BeccaNeitman Pƙed rokem +3

    Just found your channel. You are doing great mama ❀

  • @marionmeister4268
    @marionmeister4268 Pƙed rokem

    My medically complex boy is turning four this year and it's a journey I never could have imagined. You are amazing, beautiful and strong - and you will always know best! Sending you much love from Switzerland.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank You Marion!! I hope your boy is well :)

  • @jacintasalt8731
    @jacintasalt8731 Pƙed rokem

    Taking a break from each other is essential for both to reset and try again. You’re doing great!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Definitely healthy & needed some times! Thank you đŸ€

  • @throughfaithandgrace2970
    @throughfaithandgrace2970 Pƙed rokem +1

    God bless you sweet mama ❀ and your precious babies ❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      Thank you mama đŸ€ that means a lot đŸ„°

  • @corkipollock7483
    @corkipollock7483 Pƙed rokem +1

    I am a new subscriber. First thing 
.you are beautiful and your hair is gorgeous. I have never heard of your sons disability, and I’m in my 60s 
so it is rare I guess. You are such a loving mother. Thank you for sharing
your boys are adorable❀❀❀❀❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you, this is incredibly sweet & made my day đŸ„čđŸ€ the “standard” Marfan syndrome is 1/5000 - 10,000 with most people actually not knowing they have it until heart issues arise ! Neonatal Marfan is far more rare & I’m not sure there is actually a ratio of how many there are affected in the world! Until he was born I never heard of it eitherđŸ€

  • @simplysue8312
    @simplysue8312 Pƙed rokem

    Bless you...what a load you have but how capable you are.. I n New Zealand we have Mums to Mums which is grandmothers visiting twice a week when new Mums want time out. They go to bed, go shopping, sit and chat while the grandmother does the cuddling or takes bubba for a walk. All free. I wonder if you have that. I am glad you have found a compatable counsellor. Look after you,you are the glue in your family. I look forward to following your journey. Bless you all.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Oh that is so amazing to have that resource !!! Denver is approved for respite care at the children’s hospital so if for whatever reason we did something and I needed someone to watch Denver that has specialty care I can use that service ! I haven’t yet but it’s nice to know that it’s an option đŸ€

  • @joycebaker3798
    @joycebaker3798 Pƙed rokem +1

    From this little snippet of your life; you are doing a great job being a mom. It can be very challenging parenting a 2 year old.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you Joyce 💖 it’s definitely challenging, but equal parts rewarding đŸ€ I think that’s why woman have more after one haha

  • @p15541
    @p15541 Pƙed rokem +1

    Hi from Finland❀ My son is 5yo and autistic and still has bad reflux plus arfid.. And that is a hard combo. You are a great mom! â€ïžâ€ïžđŸ˜

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Oh dear I’m so sorry :( I know that must be hard on both of you ! Thank you so much for your kindness đŸ€đŸ€đŸ€

  • @savinaking8637
    @savinaking8637 Pƙed rokem +1

    Your eldest is enjoying the camera and is going to be a little film star❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      I don’t notice how much he watches himself in the camera until I edit the video haha it’s so cute how much he loves it đŸ„čđŸ˜‚đŸ€ thank you !

  • @TiffanyAnnn
    @TiffanyAnnn Pƙed rokem +2

    As a special need mom with a son with CP and Acardi G. syndrome who has avoided the feeding tube, I started to give him oatmeal and cereal. He needs extra nutrition due to his disability. He will continue to lose muscle mass which is not good as we learned the hard way. Speak with someone as soon as possible and suggest that you add extra calories. My baby boy is going on 5 years of age and we have avoided most surgeries such as a feeding tube and many others just by changing his diet and only feeding him puréed vegan/vegetarian foods. This is not to be pushy, just a little pass along to another special need mom. You got this!
    Good luck mama.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you for this advice ! We actually had a talk with a feeding specialist today! It’s such a battle to get these calories in :( we have tired adding coconut oil to his bottle then we’re told to stop it because they are worried if he aspirated the oil into his lungs it could be deadly for him since they are so weak . We have been doing oatmeal and that seems to be his favourite :) ( and by favourite I mean he hasn’t gagged it up yet so that’s a win đŸ„ł ) and I’m headed to the grocery store tomorrow to grab new flavours , I reallllly want him to eat with us. I felt like I lost the battle when we got the ng tube , I knew that was going to be the start of the dreaded g tube conversation I knew was coming
 which it did last week :( he hasn’t gained weight in a whole month even with the ng tube so I feel so defeated. But it’s important to me to keep trying for him ❀ I have never heard about Acardi G syndrome & would love to learn more about your son if you would be open to share đŸ€

  • @MrKathy09
    @MrKathy09 Pƙed rokem

    You go girl!!

  • @starfish3156
    @starfish3156 Pƙed rokem +1

    Hello little guy❀ lol what a cutie!!! God Bless xoxoxox all the best

  • @amywilkins
    @amywilkins Pƙed rokem

    You are an angel mother ❀

  • @valeriespatorico4346
    @valeriespatorico4346 Pƙed rokem

    New to your channel ❀ You are doing amazing.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you Valerie đŸ€đŸ€đŸ„°

  • @user-vx6qi5ul8t
    @user-vx6qi5ul8t Pƙed rokem

    Hi from Greece!I just found your channel and love your content.Both your babies are so cute.
    Would love to see more videos but as a mom of 2 young boys myself I understand you don't have the most free
    time.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      It’s definitely harder than I thought to video lol 😅 but i enjoy doing it đŸ€ thank you very much â˜ș

  • @lindseygundersen3951
    @lindseygundersen3951 Pƙed rokem +2

    I love how real you are! Thank you for sharing! My son had severe reflux and was on omeprazole till about 18 months old, it slowly got better over time! He was NG tube fed as well. You’re doing an amazing job it sure isn’t easy!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Seems to be the gold standard for reflux! We definitely saw a change when we incorporated it! Hope your son is well đŸ€ & thank you very much!!

  • @gabby8191
    @gabby8191 Pƙed rokem +1

    As a mom to an 8 month old daughter who has special needs, I feel you. Some days its hard and lonely. But its so worth it!! ❀ you are doing great, you are a good mom! My daughter is also fed by a tube, and has severe oral aversions. And we actually put milk on a spoon and she did so much better on a spoon vs the bottle. Just an idea, seemed to semi work with my girl!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      Hi Gabby!! our kids are about the same age! I just posted a video about trying flavours with Denver... he didn't puke but he does usually.. yesterday and today again :( i have been trying so hard so thank you for this, ill give it a try :)

    • @gabby8191
      @gabby8191 Pƙed rokem +1

      @@isabellajoyy we spent 4 months in the hospital, my daughter has had several surgeries (2 heart surgeries) so we spent a lot of time with speech/pt/ot! My daughter will not by bottle at all. She eats a very small amount of baby food a day but otherwise its all gtube! One thing I've learned so far since having her, is that she will do what she wants when she's ready. ❀(sitting up/rolling/eating/etc). He will get there too, just on his time! ❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      @@gabby8191 oh mama , I know watching your little go through surgery must have been so hard :( especially so little :( we are getting the gtube after heart surgery, I hope it does wonders for him with weight gain
 all the other moms with kids that have this condition seem to love what it has done for their child đŸ€đŸ€

    • @gabby8191
      @gabby8191 Pƙed rokem +1

      @@isabellajoyy my daughter doesn't have the same condition as Denver, she has down syndrome. But after her heart surgeries she really started to gain weight! She is a totally different baby. She had a few things wrong with her heart, but main one being an AV Canal Defect. As much as we didn't want the gtube, I am so thankful for it. Knowing she's getting the nutrients she needs to grow is such a relief! Also giving meds is so much easier! 😂. I pray that Denver can gain weight easier after surgery&with the gtube. It can be so hard when your baby struggles to gain weight/eat. We've been there, but it gets better Mama! ❀ slow progress is still progress!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      @@gabby8191 I’ve heard after heart surgery kiddos can gain weight ! I would be so happy! đŸ„°đŸ„° thank you so much for reaching out, I know it can be hard & lonesome sometimes đŸ€

  • @kimberlydiaz3277
    @kimberlydiaz3277 Pƙed rokem +2

    I believe god sends special needs kids to those woman who he considers strong and capable of such a responsibility. A weak woman is not capable of such responsibility. God bless you and those woman with special needs childrenâ€ïžđŸ•Šâ€ïž

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      This is such a uplifting post. I have become so much stronger since Denver and have done things I never thought I could handle đŸ€đŸ€đŸ€ thank you for your kindness đŸ€đŸ€

  • @irenedavo3768
    @irenedavo3768 Pƙed rokem +1

    Messy is good!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Then my house is very good at the moment đŸ˜…đŸ€

  • @ioletmcfarland3017
    @ioletmcfarland3017 Pƙed rokem

    I wish I was there for you issabelle I love washing clothes and putting them in the proper places and I love getting them to the washing machine and dryer for you and pick up the baby toys put them away in the proper places and dishes and vacuum and dusting to make sure that they don't have dirt or germs on everything

  • @digitalwarrior5995
    @digitalwarrior5995 Pƙed rokem +3

    can i just say you are absaloutley gorgeous that hair wow wow

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +2

      Thank you so much đŸ€ that made my day!

    • @dollfactory
      @dollfactory Pƙed rokem

      ​@@isabellajoyy you're beautiful and both your boys have beautiful eyes

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      @@dollfactory thank you so much! They get them from their dad đŸ€ I’m very jealous haha

  • @karlaharvey2623
    @karlaharvey2623 Pƙed rokem

    Hi Isabella, your boys are so handsome and look so very happy. Your video just popped up on my u tube page, so popped in, I’ve not seen or heard you talk about what Marfans Syndrome actually is? A connective tissue disorder. As a cardiovascular Sonographer and Nurse, I’ve only seen this once, we diagnosed this young man at the age of 17. He was really tall, his arms and legs were really really longer than average. I did an echo( ultrasound of the heart) and immediately knew he had Marfans Syndrome. Just curious if I missed your video explaining what exactly Neonatal Marfans Syndrome was. Denver is so cute and you, hubby and both sons are in my daily prayers. Thank you sweetie for sharing Denver’s story with us

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Hi yes ! I do have a video explaining a bit about it it’s one of my newer ones! Our team really only has been focusing around his heart ( for obvious reason ) so I don’t know exactly everything he goes through still. But he’s tall & very thin. His aortic root is 2.6 cm ( z score 10.6 ) & his MPA is 2 cm ( z score of 6 ) which are both getting operated on this summer ! Neonatal Marfan is the rarest and most aggressive form of Marfan syndrome and we are still learning what his future looks like đŸ€ praying these surgeries help him tremendously ! Thank you for your kindness and prayers đŸ€

  • @thehattersmadness1957
    @thehattersmadness1957 Pƙed rokem

    He may need a higher calorie formula. That way a smaller amount would satisfy his calorie needs. Especially since he is growing fast.
    Don’t sell yourself short, you are doing an amazing job. Focus on loving him day by day. Do you watch Stephanie George? I just love her attitude. And she is so honest with what they are going through with her disabled son (heart surgery, uncertain life expectancy
.) Keep up the great work. Both of your sons are adorable!â€đŸ˜Š

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      I recently started following her ! She does seem to be such a light 💕 we are currently on 30 cal / ounce formula to no avail :( I keep pushing our dietician to give him lore volume as I know he can do it 😕 I’m hoping for a weight gain next week đŸ€žđŸ» thank you for your kind comment đŸ„°đŸ’–

    • @thehattersmadness1957
      @thehattersmadness1957 Pƙed rokem

      Fingers crossed for you and your little one. I hope he turns the corner and his weight improves. Parenting is hard no matter what! No guide book. I am a mother (and a retired RN) to six with 10 grandkids now. Try to take some time for yourself. Caregiver burn out is real. You have got this! One day at a time.â€đŸ˜ŠDid you know that Abraham Lincoln had Marfans syndrome? I did a paper on it in nurses school.â˜ș

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      @@thehattersmadness1957 thank you very much! đŸ€đŸ€ oh how cool that you did a paper on that!! Yes I have :) and I have recently learned they also believed Julius Caesar had Marfan as well! So interesting ! đŸ„°

  • @SherryBaby2003
    @SherryBaby2003 Pƙed rokem

    Do you time everything ? You are very organized !!!!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      When I’m not motivated to do something I will time it haha I’ve been less motivated lately. I also am the type of person who will get carried away in a task and take 10x longer doing something if I don’t narrow down the task specifically. This way helps me with that so when I open up my closet & see it needs organizing I tell myself I can only spend 10 minutes on it and then maybe 10 the next day until I’m done. I want to spend less time doing this housekeeping tasks and more with the kids and it helps my brain. It helps me shut down, I know it sounds crazy but it really is helpful for the type of person I am lol đŸ„°đŸ€đŸ„č

  • @avaloneckert1257
    @avaloneckert1257 Pƙed rokem

    I don't know exactly what you have going on with your baby, but I've had a baby with an ng tube before who was aspirating and we did that for about 1 year. It's SO stressful when you've git a little one who has trouble feeding. Sending hugs

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Hello!! They did check for him aspirating but he doesn’t appear to be doing that by the looks of it ! It is stressful & I’m sorry you had to go through it with your baby, I know it’s hard on them and the whole family at times đŸ€đŸ€

  • @ioletmcfarland3017
    @ioletmcfarland3017 Pƙed rokem

    If you start right now with the gait trainer walker he will get used to the walker and get a standing frame for him to get used to be standing up for him and it has a working table with it so that you can feed him or he can play on it with hot wheel cars but the cars has to be bigger than hot wheel cars

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      he is supposed to get a standing frame soon!

  • @UNIQUEFREAK81
    @UNIQUEFREAK81 Pƙed rokem

    My son had reflux and the rocking chair made him puke. Wondering incase with the NG tube feeds running at the same time. Hope everything gets better 💗

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      I actually never thought of that! Thank you! He is sensitive to times I pick him up and I don’t know why I didn’t think that maybe the swinging could be bugging him! Thank you đŸ€đŸ€

  • @gloribyrd9259
    @gloribyrd9259 Pƙed rokem

    My son would get extremely thin during a growth spurt and you could see the veins on his face etc. We finally figured out that he wasn't eating enough calories to accommodate his growth spurt. We decided to run continuous feeds at night through his G-tube while he slept and did the usual daytime feeding through the g-tube. When he was older, we did the continuous g-tube feeds at night and normal oral feeds during the day. Also, when we started with g-tube feeds, we made his formula so it was higher in calories.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      I think Denver would benefit well from continuous feeds ! He isn’t g tube fed yet as we have to wait for his heart surgery to get that one done it sounds like, but I will definitely be bringing that up at our paediatrician appointment on Monday đŸ€ how is your son today?? đŸ€đŸ€

  • @kerrynuzum9793
    @kerrynuzum9793 Pƙed rokem +1

    Hi Isabella,
    I stumbled across you today and was taken by your honesty and think both are sons are just beautiful!
    I don't know if you have ever heard of Stephanie George on CZcams, she has a young son that has Cornelia de ling syndrome which is a totally different diagnosis to little Denvers but she also started her channel as she didn't have alot of information on her son Sebastian's diagnosis so feeling isolated and a new mum started her channel with same same view as yourself in mind by giving awareness to his condition and their life as a family and how they cope.
    Like you she is a wonderful young mum who adores her son with Sebastian also having oxygen and a g tube, surgeries etc.
    She would be a wonderful resource for you and would probably love share with you her experiences.
    She comes across as a super mom with a compassionate kind nature and really informative.
    I'd love it if you checked her out.
    Lots of love to you and your gorgeous young men ❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you for this kind comment ! I reached out to her ❀ our littles do seem to have a lot of the same stuff going on, as I see her son also has had heart surgeries. Thank you for taking the time to watch & be so kind to both Stephanie and myself đŸ„č❀

    • @kerrynuzum9793
      @kerrynuzum9793 Pƙed rokem

      @@isabellajoyy your so very welcome ❀

  • @lauram4124
    @lauram4124 Pƙed rokem +3

    Hey Ms beautiful Joy!
    I know your name, I just want to call you Joy if you don’t mind! I want to see new post often. I wish I lived closer to you! I live in Houston, Tx far away! I want to see more blogs and more smiles from you Mommy!!!!!
    I know you said, it’s still really cold there. So , not expecting you to go to the park but how about a shopping video or a therapy video? Or something that makes you happyâ€đŸ˜…đŸ˜…đŸ˜…đŸ˜…
    I want to see your smile. I know it’s in there!! I was a pediatric nurse for 15 hrs and a nurse for Internal Med for 14 years. Now because of my degenerative back and hip disease I can’t work. I miss it so so very much. Taking care of others is in my blood. I feel so sad I can’t do it because my body is no longer working correctly. I am here with you to be your confidant and to cheer you on with both of your beautiful children. I have been with children that have all kind of conditions and all of them as time went on made there parents and everyone around them so proud! I know Draven and Denver will do the same! I can feel you are not sure right now, but you have to look toward the future and know they will both be just fine. Like I said, if I could be by your side and talk and help you with the children it would make me so happy! I know that’s not possible right now, but hopefully in the future. You have stolen my heart and I want to do anything I can for you. I’m glad you have found a counselor to talk to. I really wish you could find a mothers group for Marphans syndrome so they can encourage you and help you to see as he gets bigger things will improve, and so will the hurt you are feeling. Until then, give these boys your all. Remember you are there only Mommy and that means you let the sun ☀ out everyday for them! Don’t be sad, use this energy to live life to the fullest with the boys as we all don’t know what will happen tomorrow. I see the hurt in your eyes and I want to take that from you so so bad! You are so beautiful and so are your boys. They are who they were meant to be. I pray you can wake up everyday and feel blessed for Denver’s every little improvement and be proud of him!
    Sending you all of my prayers 🙏 and happiness for your strength and happiness.
    I don’t know if you had a chance to ask if he can have some Zantac in addition to his Omeprazole.
    God bless you and your family. Remember it’s one day at a time and how very blessed you are.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      You speak with so much kindness, it's so refreshing to listen to such a light. I get so nervous posting our life in case someone says mean things about Denver or our family, but your comment shows me the light in this world and makes it so worth it. The hospice counsellor has been so amazing, she really opens us up and knows exactly what to say. it's only monthly counselling but I really do look forward to it. I'm on a Facebook support group for neonatal Marfan syndrome with 114 other parents going through this. the condition varies so much so I often find it hard to relate even within the condition since Denver is extremely low tone :( I don't see him walking the older he gets, which has been a hard pill to swallow.. I have a paediatrician appointment May 9th so I will definitely bring that up to get any help with his puking :) thank you!

  • @EmsLionheart
    @EmsLionheart Pƙed rokem

    Is Denver a good burper? Sometimes they (burps) are so stubborn -sometimes applying a small light pillow or towel under hand on baby’s belly (or back) and/or use a warm compress, to help loosen gas bubbles. Sending positive healing loving vibes & prayers đŸ€—

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      I’ll try burping him a bit more after & see if it helps ! He has always been a stubborn burper . Thank you !! đŸ€

  • @joycepayne3505
    @joycepayne3505 Pƙed rokem

    He has beautiful blue eyes.

  • @lauram4124
    @lauram4124 Pƙed rokem

    Hi Ms Joy,
    Maybe ask the doctor if he can have Zantac liquid as well for the acid. My daughter takes Omeprazole and Zantac liquid. It really helps.
    Hope it warms up for you soon! It’s in the 80* here in Texas. Feels like summer already!
    Sending lots of ❀ and strength to you Momma.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Thank you for that tip, I’ll bring that up to our paediatrician at our may appointment! Thank you! đŸ€ I am so jealous! It was just snowing here yesterday haha, I always tell my husband I want to retire in Texas đŸ„° !

    • @Joy21090
      @Joy21090 Pƙed rokem

      ​@@isabellajoyyI am not sure you'd really want to retire in Texas. Talk about a complete opposite from Canada! Perhaps you'd like Vermont or upstate New York.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      @@Joy21090 I’d take anywhere that doesn’t have winter for 8 months of the year đŸ„č

    • @Joy21090
      @Joy21090 Pƙed rokem

      @@isabellajoyy oh, so summer is one day of bad sledding?
      My mother grew up in upstate NY, a stone throw from Canada. That's what we used to tease her with - the summer was just one day of lousy sledding.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      @@Joy21090 yes you are correct haha, I think now that I have kids I hate it even more since we are stuck inside for most of it !

  • @gittykellerman7936
    @gittykellerman7936 Pƙed rokem

    Can you slow down the feeds? I have a baby on feeding tube and he only tolerates at a slow pace. I have also needed to change formula to one that is more easily digested. We use Elecare now.

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      I’m hoping to get off gravity feed if they will approve us so that I can better control the pace! I should ask other moms what formula use in the support group I’m in, thank you good tip đŸ„°

  • @Joy21090
    @Joy21090 Pƙed rokem +2

    Hello
    I loved the video. Your house is gorgeous and you keep it so beautiful. Applause to you! I am perhaps the world's worst housekeeper so I truly envy your lovely home.
    I'm not a medical person. I'm just a mom of 4 who also happens to be an educator, sometimes with regular kids and sometimes with extraordinary kids. (Right now I work in general education.)
    That said. .. . I wonder if he's puking up so much because the NG feeding is a bit too fast for him. Didn't you say he has gastroparesis? Maybe if you went back to the slower drip, or maybe just a bit slower, he'd throw up less??
    I was also wondering if he can get some good calories in by eating some junk food.... Like tiny spoonfuls of whipped cream perhaps?
    I can understand why his appetite is so poor with all that pressure from his ribs, and also the struggle to breathe. I know that when I just get a head cold, my appetite goes to zero. It takes so much work to breathe that eating hardly seems worth it. I mean, if you have to choose breathing or eating, breathing always wins and food can be "later". Just some random thoughts from an outsider.
    You are in my daily prayers. Keep looking UP!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      I love the whip cream idea !! I didn’t even think about that , so thank you! And yes I also think it could be the ng being quick , then other times it’s so random and unrelated to eating that I’m stumped. I would love them to switch us to a machine that helps with the feed instead of gravity. It is so finicky and some times doesn’t work and others goes so quick :(
      Thank you for your kind comment đŸ„č❀

    • @Joy21090
      @Joy21090 Pƙed rokem

      @@isabellajoyy I am hopeful that if you look around you can find some other foods that are very tongue friendly and easy to swallow plus high calorie. Like jelly.

    • @Joy21090
      @Joy21090 Pƙed rokem

      @@isabellajoyy I've been thinking all day of various things that could be tongue friendly, easy to swallow, and good source of calories. Whipped cream and jelly (jam, preserves) come to mind. Maybe super-mushed banana, like beyond the mushy that would be in a baby food jar. Maybe whipped in a blender with water. Teeny tiny potato chip crumbs, like at the bottom of the bag? Teeny tiny cookie bits? (like the pulverized Walkers shortbread I got from Amazon.... Literally powder. Grr.) I saw you guys like goldfish crackers. Maybe if you pulverized those and added some water. Sour cream? The insides of a steak fry? Applesauce. I used to have a teeny tiny blender just for making baby food. Wish I still had it, as I'd ship it to you in a flash. It only held like 1/2 cup or so and was easy to clean. Whatever it is, it's gotta be tongue-friendly so he's not averse to trying more; that's why I keep thinking of sweet and salty. It's gotta be runny so it's easy to swallow. Maybe you have one of those super Itty bitty baby spoons with the silicone spoon bowl? Good for tiny mouths with no teeth. That's all the ideas I have for the moment. But I suspect the speed of the feeder may just be overfilling his teensy tummy. Oh! I just remembered another thing we'd do with our kids. We'd use a straw to just get a teensy bit of whatever (juice, applesauce....) and put that further into the mouth than the lips (holding the top of the straw closed) and then release the substance into the mouth. It worked well when a spoon wouldn't. Oh speaking of straws it reminded me of say a McDonald's shake or other soft serve ice cream. I don't aim to turn Denver into a junk food maniac but if calories is the goal it might be worthwhile to try high-calorie items. I hope this helps. God bless! Esther in RI

  • @wanyatelborn
    @wanyatelborn Pƙed rokem

    Denver looks different but mama all he needs is love should be no developmental delays

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      So many hugs for him đŸ„°đŸ„°đŸ„°

  • @ioletmcfarland3017
    @ioletmcfarland3017 Pƙed rokem

    Can you please ask the doctor to see if you can get a gait trainer for Denver so that he can get to walk around the house and hand braces

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      he had hand braces & we might get another set later on. I think a gait trainer would be a good idea!

  • @candicesailsbury1355
    @candicesailsbury1355 Pƙed rokem

    Isabella you need to connect with
    Avery & Mummy
    And
    House of Hughes
    They will help you to not feel so alone
    Good blessings are sent your way

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +2

      I have followed them and watched their videos! Maybe I’ll reach out in their comment section and see if they want to connect đŸ„°

    • @candicesailsbury1355
      @candicesailsbury1355 Pƙed rokem +1

      @@isabellajoyy I think that’s a wonderful idea. Stay strong little momma. ❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      @@candicesailsbury1355 thank you! đŸ€đŸ€

  • @catlady6463
    @catlady6463 Pƙed rokem

    She needs to chuck that watch in the bin and stop living according to alarms! Nice way to stress yourself out~ setting lists and alarms!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      It’s definitely not for everyone, but it’s helpful for me as I’m a very task organized person :) I used to take way to long to do something but setting an alarm for me is very motivating and keeps me not doing something for way longer than I need to. Would recommend for type A people , but for someone like my husband who isn’t , then it’s not very helpful đŸ€

    • @AccountabilityCorner
      @AccountabilityCorner Pƙed rokem

      I'm a alarm momma too. It funny because instead of causing stress it brings a sense of peace. My kids like the timers also because it's a gentle prompt of what's coming up next. I can imagine that it is even more helpful to make sure you stay on top of meds. My son just had minor surgery yesterday and being aware of the time has been very important for around the clock time management!

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem +1

      @@AccountabilityCorner yes!! Thank you! I’m glad you understand , it is very helpful! We have an Alexa that is reminding us of med timing, because especially as a mom, the day can go so quick without knowing. It definitely helps me zero in on the task đŸ€

    • @AccountabilityCorner
      @AccountabilityCorner Pƙed rokem

      @@isabellajoyy anything that helps minimize the stress and stay on top of all the responsibilities of caring for our children is well worth it!

  • @laylachaaban2243
    @laylachaaban2243 Pƙed rokem +1

    Does your older son have disability

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Hi Layla, No he does not. We were all tested after Denver was born , but Denver's case was de novo

  • @wanyatelborn
    @wanyatelborn Pƙed rokem

    Just hold him and love him after he pukes

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      It hurts my heart to see him uncomfortable but he gets so much love after to try to help him out with the uncomfortable feelings đŸ€đŸ€đŸ€

  • @gloribyrd9259
    @gloribyrd9259 Pƙed rokem

    I would love to connect with you. Have you thought about creating an anonymous email address so your followers could connect with you?

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      I was thinking about an email! I’m not sure how to go about an anonymous one, I’d have to look into that ❀❀

  • @britt-louisefransson6487

    han kan ha fÄtt maginflensa , sÄ ge han blÄbÀr soppa

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      Oh I’ve never heard of blueberry soup, is it something I make ?

  • @deanv9294
    @deanv9294 Pƙed rokem

    😔 'PromoSM'

  • @thepinkpaperybectate5714

    Hey doll, I was just wondering if you have instagram? I have been watching your channel and wanted to reach out with a DM ❀

    • @isabellajoyy
      @isabellajoyy  Pƙed rokem

      My instagram is @bellajoyross đŸ€đŸ€