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Phoenix's Life With Marshall Smith Syndrome
Приєднався 13 січ 2017
Hi, I'm Phoenix and when I was only 2 months old I was diagnosed with Marshall Smith Syndrome. Not a lot of information was out there about my syndrome, so my mom and dad relied on finding information from other parents of Marshall Smith Syndrome kids. My parents created this channel to provide a resource beyond medical jargon etc, to help other parents in search of hope. We are sharing our journey so that they can see there is a lot of living to do even with such an extremely rare and unpredictable syndrome. Thank you for stopping in, welcome to my story
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.
Переглядів: 261
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
Переглядів 99Рік тому
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
Переглядів 133Рік тому
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
Переглядів 90Рік тому
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
Переглядів 114Рік тому
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
Переглядів 168Рік тому
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
Переглядів 215Рік тому
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
Переглядів 160Рік тому
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,
Переглядів 161Рік тому
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?
Переглядів 242Рік тому
Mission Keep Breathing: days 9 and 10, We get to go home?
Mission: Keep Breathing Day 8, Dear Diary, How am I doing?
Переглядів 205Рік тому
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…….
Переглядів 211Рік тому
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
Переглядів 303Рік тому
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
Переглядів 219Рік тому
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
Переглядів 338Рік тому
Mission: Keep Breathing Day 4. Seizure Detected, She’s so abusive
New Year New Me? Mission: Keep Breathing, Day 1
Переглядів 298Рік тому
New Year New Me? Mission: Keep Breathing, Day 1
We are making mud pies, the kids talk about their return to school
Переглядів 792 роки тому
We are making mud pies, the kids talk about their return to school
The Exhaustion is Real/ I was so tired after this one.
Переглядів 1302 роки тому
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
Переглядів 1122 роки тому
We Went to an Amusement Park. We went had so much fun
Playground Hopping. Phoenix and Cj take on the local parks
Переглядів 462 роки тому
Playground Hopping. Phoenix and Cj take on the local parks
CJ IS AN AMAZING BROTHER. Genetics and Urology
Переглядів 1222 роки тому
CJ IS AN AMAZING BROTHER. Genetics and Urology
Disney on Ice and We caught the “Rona”
Переглядів 1512 роки тому
Disney on Ice and We caught the “Rona”
Hey! How are Phoenix and everyone doing? Sending love and light ❤
My brother has it too ❤️🔥
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。
Hey guys...
Twerk career 😅💗💗💗
Just so we know what’s a stake here
Praise Jesus! All my love! Thank you for these vlogs. I love them so much! Marshall-Smith family for life. ❤
For life, for better or for worse
Thanks for the update. God continues to stay by your side giving you stregnth and lifting you over the hurdles. You are all Amazing❗️❤️
☀️ Promo*SM
Love you!!! Can I just say I am already looking forward to flowers or something draped from that new fancy headgear!
I wish phoenix all the best in her surgery she is so resilient and Mommy keep being strong❤❤❤
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!
Me too, thank you ❤️
Awesome experience for your family all the best
Looks like CJ had the best time!! Well done, everyone - such an important trip. 😊
Many thanks for sharing, you are a great mom ❤❤
Love seeing Phoenix outside!
Sending lot's of love...❤❤❤❤❤❤❤
❤❤❤
'Promo SM'
Such a cutie !! Incredible strong mama you got this 💕 #MedicalMama❤️
Thank you darling
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 ❤
Blessings to you all as well.
Happy Mothers day hun....hi my beautiful Phoenix ❤
Happy you all had a great field trip. Mom you are the best. Happy Mother’s Day ❤
Thank you Back at ya
I'm glad Phoenix had the opportunity to make this trip. All the best, Mommy, to you and the family.
Thank you so much ❤️
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🙏🏿❤️🙌🏿🥰
❤️❤️
Hello my beautiful family so happy to see you all nuff love every time ❤🥰👍🏾🙌🏿🙏🏿🙏🏿🥰🥰🥰🥰
Lot of love to you
Ma'am, Ma'am... the robe, though. I love it!! Okay, I'm going to watch now. Brb.
Wait a whole minute... the BOWS match the robe. I cannot with the cuteness!!!😊😊😊😊
Bows for every possibility❤️ this robe is years old and my fave
Sending you so much ❤❤❤❤❤
Hi Phoenix have a great day sweetie pie❤
My dear you are such a strong person...yes keep praying for wisdom and guidance ❤❤❤❤
Thank you so much
You are a awesome mom
❤😊
❤️
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.😍
Thank you my love
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 ❤❤❤❤❤
I completely understand
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 🇯🇲🇯🇲
Right? Top tier mommy. 🎉🎉❤
Si much love
Always admired your strength, Thank God she's home 🏡
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 ....??
Hi! Thank you very much for your support. There are no medications or cures for MSS we just treat each issue that arise
Tnq for ur reply☺️
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
Thank you so much
Love you Love you princess 😘😘😘 Mommy I am sending you big hugs you are so so strong I am so proud of you ❤️❤️😘😘😘🙏🏿🙏🏿🙏🏿🙏🏿
Thank you Hillary you also encouraging ❤️
Love you Phoenix give CJ a big hug for me You are so brave and strong and beautiful big lady lots of love ❤️❤️❤️🙏🏿🙏🏿🙏🏿😘😘😘😘😘
❤️❤️❤️
Yeah!!! So very very happy you guys are home God is good every time Love you all keep pressing ❤️❤️😘😘🙏🏿🙏🏿🙏🏿🙏🏿❤️❤️❤️❤️
Welcome home Phoenix keep pushing mommy 🤗❤️
Happy you guys are home now sis. Blessings always
❤️
You're so tired, Mama... i wish you rest. ❤️
No matter what you're going through, there's always, always LAUNDRY!!!!
Whyyyyyyyyyyy???????
Glad you guys are home. Nothing beats the comforts of home!
Happy mom and baby girl is home....
She’s looking good!🙏🏽❤
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.
Thanks Aunty Bev. It was quite the roller coaster. But happy to be home
Can’t wait to hear the results of the study. Keep breathing baby girl! We all love you so much!
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.