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TRNT1 Dad
United States
Приєднався 17 бер 2023
Jimmy was Born on 1/5/23 with a rare genetic mutation of TRNT1. We don’t know much about it but we do know this, Jimmy is a fighter and he is going to give it his all every single day.
We are blessed to have him in our lives and can’t wait to see what God has in store for him.
If you are moved to donate in any way we do have a gofundme available: gofund.me/55eaf35c
We are blessed to have him in our lives and can’t wait to see what God has in store for him.
If you are moved to donate in any way we do have a gofundme available: gofund.me/55eaf35c
Jimmy Health Update December 20th, 2024. Jimmy got his PASSY VALVE!
#nicufamily #progress #ventilator
linktr.ee/handfamily
Jimmy is doing really well and we are so happy with all the news we got from his last outpatient appointments! Plus a HUGE update is he got his Passy Valve, stick around to the end of the video to see him with it for the first time.
Jimmy was born with a RARE genetic disorder/mutation of the TRNT1 gene. It's so rare it doesn't even have a name. This genetic mutation is a metabolic mutation that can effect him in a variety of ways from what we know. Anemia, developmental delays, immunology, and cardiomyopathy are just some of the potential risks. I'm hoping to keep track of his story and hopefully creat a platform for people who MAY have a child with the same genetic disorder. I know that number is most likely small seeing how rare his disorder is but even if you'd like to stick around just to follow his story, or to feel a sense of belonging if you also have another rare genetic mutation.
Find us on all social platforms @trnt1dad
If you would like to donate to Jimmy you can do that here: gofund.me/3b660a2d
(00:00) - Intro
(00:20) - Kidneys
(01:06) - Calcium
(01:22) - Thyroid
(01:47) - Hemoglobin
(02:01) - NEW RECORD
(02:29) - New Podcast
(03:22) - Passy Valve
linktr.ee/handfamily
Jimmy is doing really well and we are so happy with all the news we got from his last outpatient appointments! Plus a HUGE update is he got his Passy Valve, stick around to the end of the video to see him with it for the first time.
Jimmy was born with a RARE genetic disorder/mutation of the TRNT1 gene. It's so rare it doesn't even have a name. This genetic mutation is a metabolic mutation that can effect him in a variety of ways from what we know. Anemia, developmental delays, immunology, and cardiomyopathy are just some of the potential risks. I'm hoping to keep track of his story and hopefully creat a platform for people who MAY have a child with the same genetic disorder. I know that number is most likely small seeing how rare his disorder is but even if you'd like to stick around just to follow his story, or to feel a sense of belonging if you also have another rare genetic mutation.
Find us on all social platforms @trnt1dad
If you would like to donate to Jimmy you can do that here: gofund.me/3b660a2d
(00:00) - Intro
(00:20) - Kidneys
(01:06) - Calcium
(01:22) - Thyroid
(01:47) - Hemoglobin
(02:01) - NEW RECORD
(02:29) - New Podcast
(03:22) - Passy Valve
Переглядів: 379
Відео
Medically Dadicated Ep. 1: Conversations with NICU/Medically Complex Dad Dave Dickerson
Переглядів 38719 годин тому
#Noonan #nicufamily #geneticdisorders Join us in this heartwarming episode of "Medically Dadicated," where we dive into the inspiring journey of Dave Dickerson, a dedicated father of a medically complex child. Dave shares his powerful story of advocating for his NICU baby and the challenges he faced along the way. This conversation sheds light on NICU parent advocacy, providing valuable insight...
What is PEEP, PIP, & Pressure Support? - Ventilator Terminology
Переглядів 100День тому
#trachea #ventilator #terminologies linktr.ee/handfamily In this video, I break down the essential concepts of PEEP, PIP, and Pressure Support and explain their significance in ventilator settings. Learn what these terms mean, how they interact with the ventilator, and their impact on your child or patient’s care. Stay tuned for a visual example at the end that illustrates these concepts clearl...
How to Prepare for a Multi Day Journey with Your Medically Complex Child
Переглядів 29514 днів тому
#medical #tracheostomy #travel Planning a Multi-Day Trip with a Medically Complex Child: Essential Preparation Guide" Embarking on a multi-day trip with a medically complex child requires meticulous planning and foresight. This guide will help you navigate the essential steps to ensure a safe, enjoyable, and stress-free journey for your family. Key Preparation Steps: Medical Essentials Packing:...
How to Change Out the Circuit for your Home Ventilator!
Переглядів 529Місяць тому
#circuitchange #trach #ventilator We have a son who is on a trach and a ventilator at night. We have to change out his circuit once every week. It's not that hard but it can be particular and you will have to know how to do this if you are a parent or caretaker for someone who uses a ventilator. This is a video that I made showing you step by step all the things that we need to do to change out...
Watch Jimmy's Emergency Trach Change - Front Yard Ring Camera Footage of a VERY SCARY Moment
Переглядів 2812 місяці тому
Watch Jimmy's Emergency Trach Change - Front Yard Ring Camera Footage of a VERY SCARY Moment
Babytrend Expedition vs Navigator: 2 in 1 Wagon Battle!
Переглядів 3,8 тис.4 місяці тому
Babytrend Expedition vs Navigator: 2 in 1 Wagon Battle!
Attendant Care Program CRISIS for Indiana
Переглядів 16211 місяців тому
Attendant Care Program CRISIS for Indiana
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Переглядів 56911 місяців тому
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Let’s talk about $$$ and NICU / PICU life.
Переглядів 251Рік тому
Let’s talk about $$$ and NICU / PICU life.
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Переглядів 624Рік тому
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Updating on Jimmy's Journey: A Week Later
Переглядів 611Рік тому
Updating on Jimmy's Journey: A Week Later
Jimmy's Birth Story, This Wasn't an Easy One To Create
Переглядів 46 тис.Рік тому
Jimmy's Birth Story, This Wasn't an Easy One To Create
Bless that Family ❤
Thank you so much 😊
I hope you post often even if it's not really long but it is a good place to vent when God's busy with someone
I love to use UA-cam as almost a journal. I started with TikTok but the short form is less in depth. And as a videographer I much prefer horizontal video haha
He's beautiful ❤
Thank you so much 😊
Bless you all. Little Jimmy is so sweet! With God, all things are possible!
Amen! Thank you so so much!
What a darling, strong little guy he is! 🥰
He’s such a strong little warrior. He’s my hero !
The most poignant quote I ever read about parenthood goes something like this: “How hard it is that we are given these precious, helpless little beings to protect and raise into happy, healthy people….while still only being human ourselves.” We’re all human, we’re all going to make mistakes, screw up, etc. I’m sorry this happened, and I’m really glad that lil man pulled through. Please don’t be too hard on yourself.
🥹 this is probably my favorite comment so far. Thank you so much for this!
Do you have to have a certain kind of car seat for the car seat attachment? Or can you use any kind of infant car seat with the attachment?
Any kind of infant car seat will work :) you just set it on top of
What a sweet baby boy you were blessed with. I have a son (now 27) who was born with only half of his heart. It is amazing what medicine can do now. I know God gave you Jimmy for a reason and all any of us can do is take life one day at a time! Enjoy him! Only God knows what the future holds!❤
@@KeriPost what an amazing story!!!! I would love to hear more about that :)
So sorry for the worst news a parent can hear, what a way to begin life. So happy to hear he's doing so much better. I try to think when Drs share bad news...they are my on earth message for possibly realty voice...but they are by no means the final voice. God is answering prayers non stop and he hears all prayers and cries and voices... He is our Almighty God!!! God I pray you watch over all of our children they all need you so much. Please speak to us when we have an action to make so we can fulfill your meaning for us.
@@AliJaeJR this is so well put! We have always followed the model of giving God room to work in Jimmy’s life and boy has he!!! ❤️
Prayers to you and your family. You do what you feel is right for your family .Don't let others judge'. Also Merry Christmas and a wonderful New Year to you and yours!!!
Merry Christmas to you and your family!!!
I'm so happy for you, but is he going to have a good quality of life? He is going through all these blood draws and tests. I just wonder where all this will lead and if it will be worth it for your son. Prayers to your family.
Hi Becky, thanks for the comment. Every decision we ever make is fueled by the phrase "Just do the next right thing for Jimmy". This includes making the right decisions for his long term health. Jimmy had a Leukoencephalopathy scare a while back, and when we were given that news we were prepared to let him pass if the guaranteed outcome was a slow death. Turned out that was an incorrect diagnosis and we were so blessed for that. I say that to provide a window of clarity on our mindset, when push comes to shove if God made it abundantly clear that it was Jimmy's time to go and his future is a poor quality of life, we will act accordingly. However, currently he is only slightly delayed and we are getting on LESS meds and having to do LESS intervention for him. He can FULLY grow out of the things he is dealing with and with the right support he could live a relatively normal life so we are not taking that out of his or God's hands. Final piece that I will say is that this crying in the video is very uncommon for Jimmy. He is SUCH a happy soul and is filled with Joy 99.99% of the time. He is progressing and living a great life out of the hospital now. We are his parents, but he is God's child first, and who are we to decide what is "worth it" for Jimmy. Hopefully this comment did not come off rude in any way, I truly do appreciate your comment and I hope that I was able to adequately share our perspective.
Dear TRNT1 Dad, I want to take a moment to thank you for your insightful and compassionate response to the question asked by the above commenter. We come to you as outsiders who (generally) have little medical knowledge and certainly no experience with what your little boy and family are contending with. Sometimes someone’s question might feel invasive and some parents would get defensive when their choices for the present or future are questioned….and who can blame them? Thank you for answering with such grace, and openness and allowing us on the outside to learn along with you. The sacrifice you make in terms of some level of privacy will help spread an understanding of your beautiful boy’s condition and hopefully reach someone going through something similar. Thank you for answering our questions with compassion. Sending high hopes and thoughts for your family! Have a merry Christmas!
I was born in July 1997. My Mom had a Amio at around 30 weeks along. They detected my birth defect via ultrasound but told my parents if the Amio came back positive for any genetic conditions they would not do any interventions after I was born. The testing came back negative for any genetic conditions.
@@courtneyfan9 thank you for sharing! So cool that they are able to accurately predict so many things before a baby even is born.
I really believe your touch is what brought up his numbers.
It was probably the first gentle touch he had ever experienced 🥰
God's blessings to you all.
@@melodymacken9788 thank you so much 🙏🏻
The next birthday my son will have is his 60th. Modern medicine and wonderful doctors saved him when he was born with several heart defects, though not as serious as your little Jimmy. I wish that you will have the same future for yours.
Thank you so much for this story of success! These moments give us so much hope for Jimmy’s future 🙌🏻
When my son was born he was given 6 months to live. Over the years dr's have told me to be prepared, that he wasn't going to make it a least 6 times. His brother is a dr and told his dad "they don't know what's going to happen to him-he writes his on book". My son is 51 years old and the healthiest he has ever been. Never give up. God has a purpose for everything.
THIS!! We have been told the same countless times and we are so blessed to have him. Never gave up and never plan on it. So happy to hear about your sons amazing story ❤️
Sending tons of Love and Prayers to you and your precious son.🙏💙🙏👣🙏💙🙏💙👣💙
Amen, thank you so much! 🙏🏻🙏🏻
Great review! Thank you!!! Time to convince my husband to get the navigator for the kids!
This video should help with that :) It’s honestly so great to have! Especially for bigger day trips.
Sounds like you two are heading for burnout. Take a lil rest even for just a day. God bless you abundantly.
We got away for our anniversary, it was much needed.
Fantastic video ❤ I wish more videos like this was on UA-cam, I guarantee you, somewhere, there’s a special needs mama & daddy, that this video truly helped. Ideas you guys shared on preparing a trip with circumstances like you guys, are just fantastic. God bless 🙏🙏 You all have a beautiful, precious family ❤ Thanks for sharing
That is 100% our goal, to share our story and in doing so help a family like ours, even just one. It makes it all worth it.
I had to laugh at the “Hates Naps” part. I am a 27 year old former NICU warrior and I dislike sleeping lol
@@courtneyfan9 there’s gotta be some correlation 🤣 he still dislikes falling asleep haha
All of you did good. Edited to add: Yeah, EMS rides ready to throw hands with death when it comes to kids. I'm glad everything turned out ok.
Thank you so much!
He’s a cutie. Despite all of his medical problems, he looks great and most babies I know have a favorite something - stuffed animal, binky, blanket, etc. Some of them don’t like naps, laying down for a diaper change, or being put into a car seat. Will you please keep us posted about Jimmy? Thanks.h
@@ninademci1500 absolutely!!!
Jimmy is such a beautiful and precious gift. Thank you for sharing your story. Subscribed to follow you journey. ❤
Thank you so much!
Even just the concept of charging people for necessary medical care in a first world country is barbaric! I am glad your church family have been so supportive. Grateful God provides.
@@nyetgale I 100% agree!!!
Pretty baby love him god bless your family
@@DeniseFiegel thank you Denise
Praying for healing for this precious baby boy.
God has been with in this journey. Jimmy is adorable
@@patriciawilliamsn9605 absolutely no doubt about it 🙏🏻
😊
😊
Medical expenses need to be covered by the government in civilised societies. Period.
@@Jdjustsaying agreed!!!
I watched the birth video but I can’t remember what syndrome he has? Can anyone tell me? Thanks ❤
@@Jdjustsaying it’s a gene mutation. TRNT1 is the gene that is mutated
Omg he’s a miracle and so beautiful
He truly is, this kid is amazing 🤩
Bless this little guy and his family. ❤💖💕
Thank you!
I just found your story today, I binged watching it all day today, your family is beautiful and I know there must be so many ups and downs but watching you grow in your faith and the love and care you bring to every member of your family. You are there for Jimmy every single day, no matter what. Your all in my thoughts and prayers and thank you for sharing it all with us. God bless❤
@@spiritthingw thank you so so much. We really are blessed and I am so happy that the love for my family shows through the videos. We have had ups and downs but Jimmy has taught us all so much and faith growing through this is an exact correct statement. Thank you for following along the journey 🙌🏻❤️
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I am an Ex NICU RN and Midwife. God was with Jimmy, you and your wife, along with the hundreds of people who cared for him. I am so glad you have your little man at home. I pray he is with you for a long time. You have been blessed.
@@wendyschutze2818 amen! Thank you for all you’ve done, truly a hero 🦸
Love the hair! ❤
Thanks!
🍀❤️🙏🏻❤️🍀
❤️
What a beautiful miracle you have there. God truly is so good. ❤
He truly is! God does truly amazing things!
What a lucky baby, not just for being a little miracle, but for having such incredible parents who loved him SO SO much before he was ever even born.
We truly did 🥰 he’s our little miracle 🙌🏻
Omg he's so cute!!!! Congratulations on your beautiful son
Thank you so much!
God bless your precious son, Always ❤🙏🏻
Amen 🙏🏻 thank you!
❤❤❤
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The doctors at Laurie's Childrens Hosp. saved my grandson's life. He was born with Neuroblastoma. Had surgery when he was a one year old baby. He will be 10 years old soon. God is good!
My daughter was diagnosed at 13 months after being born 6 weeks early. They think she had it for a while before diagnosis because it was stage 3. She fortunately beat hers too and is now 8 1/2 years old!
God is great. Bless you warriors
it's actually science rather than some imaginary thing..@@Arlene-i9r
They are so great there! Thank you so much for sharing your story ❤️
Amen!!! 🙏🏻 little miracles walking all around us!
God bless you all. Get well Jimmy. ❤
Thank you! He’s doing so well!
God,still working miracles, praise God 🙏🙏🙏🙏
Always! We are so BLESSED
Amen!!! 🙏🏻
Jimmy's excitement is so cute. Wishing all good health!
@@squeeerle amen 🙏🏻 thank you!!! He’s doing really well. :)
ALMIGHTY GOD BLESS AND HAVE GREAT MERCY ON YOU AND YOURS ALWAYS, IN THE PRECIOUS NAME OF JESUS CHRIST, OUR LORD AND SAVIOUR, AMEN ♥️
Amen! 🙏🏻 thank you so much!
Such a beautiful, precious, perfect baby 🤗
@@sigridgariepy526 thank you so much 😊