Phoenix's Life With Marshall Smith Syndrome
Phoenix's Life With Marshall Smith Syndrome
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The roller coaster of Spine Correction
Phoenix had her spine corrected in a series of events from August 10 to her Surgical Procedure August 30 to now recovery. This is a roller coaster to say the least. I am breaking this down as it is happening.
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Відео

It’s a Dear Diary Moment, UPDATES UPDATES,
Переглядів 171Рік тому
This is what summer has been like for us so far, Here’s why were dreading the month of August.
Advocacy day in Washington DC 2023
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We had the privilege of visiting Washington DC recently. We got to see some legislators, law makers and overall had a wonderful time sightseeing as well.
Fourth Grade Finale/ End of year field trips
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We’re taking you along for the world tour of field trips to finish off fourth grade for Phoenix.
Quick Appointments, Phoenix loves riding her bike
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We had some very quick appointments and blood draw. Nothing dramatic this time around. Phoenix now has a bike and she’s been so excited to ride.
New AFO’s, GI and Paper Airplanes
Переглядів 105Рік тому
We had appointments to get Phoenix’s new AFO’s measured and designed. Phoenix grew out of her old ones. Phoenix’s GI appointment went great, she is gaining weight steadily. We got to do paper airplanes to end our day.
Phoenix’s Field Trip To Madison
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Phoenix recently had a field trip with her classmates to Madison, our state Capitol building and the Historic Museum. Phoenix had a great time. It wa interesting navigating the building itself but overall we had a great time.
We went to the dentist
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Both kids had a dentist visit recently, all went went well. Phoenix did such a good job sitting nicely for her cleaning
Get ready with me for school
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We are sharing with you all that it takes every morning to get ready for school. Phoenix is woken up around 6;30-6;45am and we are out the door usually around 7;45-8;00am
Surgical Plans to correct my Kyphosis and Scoliosis
Переглядів 96Рік тому
We are making plans tp correct Phoenix’s Kyphosis and Scoliosis. This is going to be a major one but we are just in the initial stages of planning for these series of surgeries.
Mom now goes to school with me, Rehab Clinic and Dermatology
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We have been slacking off with posting videos, now we are getting into some normalcy. We are updating on how life has changed since Phoenix’s most recent hospitalization.
It feels good to be home, Let’s get her room Organized,
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We are home, we have been getting supplies delivered and are working hard on getting her room organized and ready. She’s not back in school yet, but hopefully we will be soon.
Mission Keep Breathing: days 9 and 10, We get to go home?
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Mission Keep Breathing: days 9 and 10, We get to go home?
Mission: Keep Breathing Day 8, Dear Diary, How am I doing?
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It’s been 8 days int he hospital Trying to figure out why this unicorn will spontaneously stop breathing. We have more things to try, including a pasty Muir valve.
Mission Keep Breathing: Day 7 Virtual School, Waiting Waiting…….
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Nothing to update, we are catching up on sleep, we got a chance to go through virtual school. And we are waiting
Mission: Keep Breathing Day 6, Trach Change, Sleep Study, Music Therapy
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Mission: Keep Breathing Day 6, Trach Change, Sleep Study, Music Therapy
Mission:Keep Breathing Day 5. MRI of Brain and Spine Done. Here’s my rant for the day
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Mission:Keep Breathing Day 5. MRI of Brain and Spine Done. Here’s my rant for the day
Mission: Keep Breathing Day 4. Seizure Detected, She’s so abusive
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Mission: Keep Breathing Day 4. Seizure Detected, She’s so abusive
Mission: Keep Breathing Day 3
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Mission: Keep Breathing Day 3
Mission: Keep Breathing Day 2
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Mission: Keep Breathing Day 2
New Year New Me? Mission: Keep Breathing, Day 1
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New Year New Me? Mission: Keep Breathing, Day 1
A weekend With Bear
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A weekend With Bear
We are making mud pies, the kids talk about their return to school
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We are making mud pies, the kids talk about their return to school
The Exhaustion is Real/ I was so tired after this one.
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The Exhaustion is Real/ I was so tired after this one.
Make some cookies with us! The kids wanted to share their favourite cookies with you.
Переглядів 792 роки тому
Make some cookies with us! The kids wanted to share their favourite cookies with you.
We Went to an Amusement Park. We went had so much fun
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We Went to an Amusement Park. We went had so much fun
Playground Hopping. Phoenix and Cj take on the local parks
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Playground Hopping. Phoenix and Cj take on the local parks
CJ IS AN AMAZING BROTHER. Genetics and Urology
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CJ IS AN AMAZING BROTHER. Genetics and Urology
Disney on Ice and We caught the “Rona”
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Disney on Ice and We caught the “Rona”
A visit from Bear and Virtual school
Переглядів 1312 роки тому
A visit from Bear and Virtual school

КОМЕНТАРІ

  • @ginaalexandra_
    @ginaalexandra_ 6 місяців тому

    Hey! How are Phoenix and everyone doing? Sending love and light ❤

  • @Pugvr-14
    @Pugvr-14 Рік тому

    My brother has it too ❤️‍🔥

  • @木田守栄
    @木田守栄 Рік тому

    私の娘もマーシャルSmith症候群です。大変ですがお互いに頑張っていきましょう。

  • @spicykennag
    @spicykennag Рік тому

    Hey guys...

  • @thejamaicandoor2800
    @thejamaicandoor2800 Рік тому

    Twerk career 😅💗💗💗

  • @jennifergilchriest849
    @jennifergilchriest849 Рік тому

    Praise Jesus! All my love! Thank you for these vlogs. I love them so much! Marshall-Smith family for life. ❤

  • @florencechin6509
    @florencechin6509 Рік тому

    Thanks for the update. God continues to stay by your side giving you stregnth and lifting you over the hurdles. You are all Amazing❗️❤️

  • @watts805
    @watts805 Рік тому

    ☀️ Promo*SM

  • @emilyjohnson5462
    @emilyjohnson5462 Рік тому

    Love you!!! Can I just say I am already looking forward to flowers or something draped from that new fancy headgear!

  • @patriciamcneil9220
    @patriciamcneil9220 Рік тому

    I wish phoenix all the best in her surgery she is so resilient and Mommy keep being strong❤❤❤

  • @gilmoregirlsfan131
    @gilmoregirlsfan131 Рік тому

    That makes a lot of sense, staying extra because of location. Sounds like a big month for you all, hoping it will go as smoothly as possible for all, especially Phe!

  • @patriciamcneil9220
    @patriciamcneil9220 Рік тому

    Awesome experience for your family all the best

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    Looks like CJ had the best time!! Well done, everyone - such an important trip. 😊

  • @ivythorne6094
    @ivythorne6094 Рік тому

    Many thanks for sharing, you are a great mom ❤❤

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    Love seeing Phoenix outside!

  • @ivythorne6094
    @ivythorne6094 Рік тому

    Sending lot's of love...❤❤❤❤❤❤❤

  • @suziebcute2282
    @suziebcute2282 Рік тому

    ❤❤❤

  • @river994
    @river994 Рік тому

    'Promo SM'

  • @tbenoit50
    @tbenoit50 Рік тому

    Such a cutie !! Incredible strong mama you got this 💕 #MedicalMama❤️

  • @gaberosa3040
    @gaberosa3040 Рік тому

    God bless you all!! We are also going through the same with Sofie having MSS and an older brother who cares deeply for his sister. May the Lord give you all the strength ❤

  • @triciachin-yee4918
    @triciachin-yee4918 Рік тому

    Happy Mothers day hun....hi my beautiful Phoenix ❤

  • @hopehudson7086
    @hopehudson7086 Рік тому

    Happy you all had a great field trip. Mom you are the best. Happy Mother’s Day ❤

  • @yvonnemiller1284
    @yvonnemiller1284 Рік тому

    I'm glad Phoenix had the opportunity to make this trip. All the best, Mommy, to you and the family.

  • @hillaryrichards9295
    @hillaryrichards9295 Рік тому

    It was so lovely to see my beautiful Phoenix and CJ going off to school love you both big hugs and kisses nuff love mommy and daddy stay blessed and in Gods grace🙏🏿❤️🙌🏿🥰

  • @hillaryrichards9295
    @hillaryrichards9295 Рік тому

    Hello my beautiful family so happy to see you all nuff love every time ❤🥰👍🏾🙌🏿🙏🏿🙏🏿🥰🥰🥰🥰

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    Ma'am, Ma'am... the robe, though. I love it!! Okay, I'm going to watch now. Brb.

  • @ivythorne6094
    @ivythorne6094 Рік тому

    Sending you so much ❤❤❤❤❤

  • @suziebcute2282
    @suziebcute2282 Рік тому

    Hi Phoenix have a great day sweetie pie❤

  • @ivythorne6094
    @ivythorne6094 Рік тому

    My dear you are such a strong person...yes keep praying for wisdom and guidance ❤❤❤❤

  • @patriciamcneil9220
    @patriciamcneil9220 Рік тому

    You are a awesome mom

  • @jacquelinebrockett8923
    @jacquelinebrockett8923 Рік тому

    ❤😊

  • @dianneswann3808
    @dianneswann3808 Рік тому

    God got you cousin, we Jamaican moms are built strong. ✊🏼🇯🇲Sending you much strength and love . He doesn’t give us what we can’t handle. Family looking great.😍

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    Thank you, thank you for posting... I've been so worried about Phoenix. Don't take this as any pressure to post.. I'm just that mad aunty that has everybody at work asking about Phoenix. All the love ❤❤❤❤❤

  • @suziebcute2282
    @suziebcute2282 Рік тому

    Really have to give you a big thumbs up mommy it's not easy doing what you are doing and keeping a positive mindset. I know sometimes you feel defeated but you brush it off and go again. Sending you more energy from 🇯🇲🇯🇲

  • @keishajlewis1986
    @keishajlewis1986 Рік тому

    Always admired your strength, Thank God she's home 🏡

  • @vishnuba6724
    @vishnuba6724 Рік тому

    Hi Dear..Hope Phoenix is fine now...I am from India,I have gone through all your videos ...when I saw ....I was getting goosebumps ...such a wonderful mommy Phoenix has got.... always with her through all the ups and downs facing with full courage ....truly you are a brave Mommy...let me know at present is there any proper medication for this syndrome ....??

    • @phoenixslifewithmarshallsmith
      @phoenixslifewithmarshallsmith Рік тому

      Hi! Thank you very much for your support. There are no medications or cures for MSS we just treat each issue that arise

    • @vishnuba6724
      @vishnuba6724 Рік тому

      Tnq for ur reply☺️

  • @nahjhassitandtalk
    @nahjhassitandtalk Рік тому

    I love how colourful you choose to be...it suits you well because having to deal with all you that you do you could choose to be pale, sad and gloomy but you dont and i commend you for that...hugs mama...#missionkeepbteathing

  • @hillaryrichards9295
    @hillaryrichards9295 Рік тому

    Love you Love you princess 😘😘😘 Mommy I am sending you big hugs you are so so strong I am so proud of you ❤️❤️😘😘😘🙏🏿🙏🏿🙏🏿🙏🏿

  • @hillaryrichards9295
    @hillaryrichards9295 Рік тому

    Love you Phoenix give CJ a big hug for me You are so brave and strong and beautiful big lady lots of love ❤️❤️❤️🙏🏿🙏🏿🙏🏿😘😘😘😘😘

  • @hillaryrichards9295
    @hillaryrichards9295 Рік тому

    Yeah!!! So very very happy you guys are home God is good every time Love you all keep pressing ❤️❤️😘😘🙏🏿🙏🏿🙏🏿🙏🏿❤️❤️❤️❤️

  • @suziebcute2282
    @suziebcute2282 Рік тому

    Welcome home Phoenix keep pushing mommy 🤗❤️

  • @nahjhassitandtalk
    @nahjhassitandtalk Рік тому

    Happy you guys are home now sis. Blessings always

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    You're so tired, Mama... i wish you rest. ❤️

  • @bridgebridgebridge
    @bridgebridgebridge Рік тому

    No matter what you're going through, there's always, always LAUNDRY!!!!

  • @MarvCam42
    @MarvCam42 Рік тому

    Glad you guys are home. Nothing beats the comforts of home!

  • @triciachin-yee4918
    @triciachin-yee4918 Рік тому

    Happy mom and baby girl is home....

  • @pamelabryan9046
    @pamelabryan9046 Рік тому

    She’s looking good!🙏🏽❤

  • @bevblanchardholt6518
    @bevblanchardholt6518 Рік тому

    So happy that you got some resolutions and a plan in place. I feel your joy and relief. Praying that everything continues to work out well. You’re stronger than you know.

  • @bevblanchardholt6518
    @bevblanchardholt6518 Рік тому

    Can’t wait to hear the results of the study. Keep breathing baby girl! We all love you so much!

  • @bevblanchardholt6518
    @bevblanchardholt6518 Рік тому

    Doing some catching up, the ending made me smile. So precious. Loved how the snuggles instantly made it better as well. Happy that some progress is being made, no answers yet but you are getting there slowly and hopefully you will have that one most important answer soon. Actually two, the why and the what can we do to prevent it answers.