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Troy's Journey

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Troy's Journey

Born at 29 weeks Troy has cerebral palsy spastic quadriplegia, epilepsy, gtube fed, & nonverbal Currently our little man keeps busy with 8 therapies a week.

Our "Baby Boy Troy" was born prematurely on August 17, 2012 at 29 weeks & weighed only 2lbs 6oz. At just 2 weeks, Troy became very sick & developed a blood infection. Because of this he had to go back on the ventilator and had multiple blood and platelet transfusions. But our little fighter pulled through as always and beat the odds. At his one month head ultrasound we found out our baby had Periv

entricular leukomalacia (PVL) a brain injury characterized by the death of the white matter of the brain. Troy spent 51 days in the NICU before we were finally able to take him home on October 7, 2012. At about 7 months he started physical & occupational therapy as well as vision therapy. Troy also battles infantile spasms (a specific type of seizure), cortical visual impairment, feeding issues, reflux and more. Most recently Troy was diagnosed with cerebral palsy spastic quadriplegia on January 7th, 2014. Troy has severe gross motor delays and will require extensive therapy. Troy also requires adaptive equipment such as wheelchair and stander etc. Troy will need longtime specialized care & assistance. Although we were heartbroken with the news we have faith in our little fighter and know that he will get through this as he has everything else. This is Troy's Journey. Here you will see his challenges but mostly be amazed by his accomplishments. He is our miracle and we want to share him with you. I hope you all will learn as much as we do from our little fighter Troy on his journey. Any donations for Troy's Journey would be greatly appreciated. Please note we are not a 501c so these cannot be used as tax write offs. PayPal: TroysJourney17@gmail.com

03/24/2026

Go Green for Troy 3/25 💚

Tomorrow, we’re asking everyone to wear green for Cerebral Palsy Awareness Day!

Our son Troy has spastic quadriplegia, which affects all four of his limbs. Something as simple as sitting up or holding his head up, things many take for granted, are daily challenges for him. But that doesn’t stop him.

Every single day, Troy shows up.
He works. He pushes. He fights.

In school, in therapy, in every small moment that most people don’t see… he is building strength, one inch at a time.

There is no cure for Cerebral Palsy. It’s something we will navigate for life.

But what there is… is resilience, determination, and a spirit that refuses to give up.

We don’t know exactly what the future holds, but we do know this:
We will be right beside him every step of the way.

And we are so incredibly grateful for the love and support from our community because Troy’s Journey is not just his… it’s all of ours 💚

Wear green. Start conversations. Spread awareness.

💚

03/23/2026

Don’t forget… 💚

March 25 is National Cerebral Palsy Awareness Day and we’re asking everyone to wear green in support.

For many, it’s just a color.
For us, it’s hope, love, strength… and a journey we live every single day.

Cerebral palsy doesn’t define our kids — but it shapes their fight, their resilience, and the way they show up in this world with a strength most people will never understand.

So on March 25, wear green not just for awareness…
but for inclusion, for understanding, for the families walking this path, and for every child like Troy who continues to inspire us daily.

💚 His fight is my fight.
💚 And we don’t walk it alone.

03/17/2026

Happy St. Patrick’s Day ☘️💚

Today we wear green… but for us, it hits deeper.

People see the smiles.
The outfits. The pictures. The moments.

But behind that… there’s a whole different story.

What people don’t see:
The middle of the night wakeups when his body won’t rest.
The exhaustion that builds before the day even really starts.
The planning it takes just to do the “simple” things.

What looks like an ordinary day…
is actually a body working overtime just to keep up.

What some people call “slow”…
is years of therapy, patience, setbacks, and starting over again and again.

This life looks like:
• pushing through discomfort quietly
• putting in extra effort for basic things
• carrying a level of exhaustion most people will never understand

And let me be clear…
this is not laziness.
this is not lack of effort.
this is constant, relentless work.

And it’s not just Troy’s journey.

It’s Isabella’s too. 💚
The way she shows up for her brother, loves him, includes him, and shares his story with pride…
that kind of heart isn’t taught, it’s who she is.

Today isn’t just about luck.
It’s about awareness.
It’s about seeing beyond what’s right in front of you.

So when you wear green today…
remember the families living this every single day.

The strength you don’t see is the loudest part of our story. 💚

03/17/2026

💚 This month means more than words can fully capture 💚

March is Cerebral Palsy Awareness Month, and as we approach March 25, we’re asking everyone to wear GREEN in support of a community that is so close to our hearts.

I recently had the opportunity to read “Emori Wears Green” to Isabella’s Girl Scout troop and share Troy’s journey. But what stayed with me the most wasn’t just the conversation it was watching Isabella.

Sometimes we focus so much on Troy’s journey that we forget… this is Isabella’s too.

The courage it takes for her to speak about her brother, to stand proudly in front of her peers, and to open her heart in such a genuine and loving way it’s something I will never take for granted. That moment filled me with a kind of pride and emotion that’s hard to put into words. 💚

Troy has taught our family strength in ways we never imagined. And Isabella reminds me every day what true compassion, empathy, and kindness look like.

The girls listened, they asked questions, and they showed up with open hearts. And that’s where change begins… with understanding, with conversations, and with moments like this.

Cerebral palsy may be part of our story, but it does not define it. Love, resilience, and connection do.

On March 25, wear green. Start a conversation. Teach the next generation what inclusion truly looks like.

Because awareness turns into understanding… and understanding turns into kindness. 💚

03/10/2026

The part of cerebral palsy treatment most people never see.

Today Troy had his routine Botox injections and alcohol nerve blocks to help manage the severe muscle tightness caused by cerebral palsy.

The goal of these treatments is to improve comfort, positioning, mobility, ease of care, and help prevent long-term deformities that can happen when muscles remain constantly tight.

Today Troy received 300 units of Botox, including injections in the small muscles of both hands and his salivary glands to help reduce drooling. He also received alcohol nerve blocks in several nerves in his legs to help reduce spasticity and slow the progression of hip problems.

The procedure itself went well and Troy remained stable the entire time.

But the hardest part is always when he wakes up.

When Troy came out of anesthesia today, he was absolutely miserable. His heart rate shot up, he was crying and screaming, and nothing seemed to comfort him. He received two rounds of morphine, we tried repositioning him, and I even held him standing hoping it would help.

Nothing worked.

It wasn’t until we put him back in his wheelchair and walked the hospital hallway that he finally began to calm down.

This is the reality many families with medically complex children know too well. We choose these treatments because they help our kids in the long run, but the recovery moments can be heartbreaking to watch.

Thankfully, after some time moving through the hallway, Troy finally started to settle.

Tonight we focus on rest, comfort, and hopefully an easier tomorrow. 💚

If sharing Troy’s journey helps even one person better understand cerebral palsy, then every post is worth it.

03/09/2026

Cerebral palsy awareness isn’t just green ribbons in March, sometimes it looks like hospital rooms, anesthesia, and recovery days.

It’s been a while since I’ve posted here, and I want to start by apologizing for being quiet over the last year. Life has been a little chaotic, and sometimes survival mode takes priority over sharing. But since March is Cerebral Palsy Awareness Month, I feel compelled to continue sharing Troy’s story to bring awareness and hopefully offer support to other families walking a similar path.

Today Troy had his routine alcohol and Botox injections.

Before the procedure, I spoke with his physiatrist (a specialist who focuses on the nonsurgical treatment of conditions that cause physical weakness, pain, and mobility issues) to review where Troy would be receiving his injections. As usual, we targeted his hands, arms, and hamstrings to help reduce the severe spasticity caused by cerebral palsy. We also continued injections into his salivary glands to help reduce drooling.

For those who may not know, these procedures help relax muscles that are constantly tight and pulling due to spasticity. Botox helps temporarily weaken overactive muscles, and the alcohol injections interrupt nerve signals that cause severe muscle tightness. The goal is to give Troy more comfort, improve positioning, and help with daily care and therapy.

Even though we’ve been doing this for years, it never gets easier watching him go under anesthesia and knowing how uncomfortable he will be when he wakes up.

The procedure lasts about two hours. When Troy wakes up, that’s usually the hardest part. Today his oxygen levels were a little low at first, so he needed some oxygen support, but thankfully they stabilized once he fully woke up.

Unfortunately, waking up is often miserable for him. The injection sites are painful, and the alcohol injections leave him feeling what I can only describe as “hungover.” His breath even smells like alcohol. He wakes up groggy, sometimes with a headache, and very irritable. The team can give medications like Tylenol, morphine, and Benadryl to help manage the discomfort, but this part always breaks my heart.

No matter how many times we go through this, watching him struggle in those moments never gets easier.

Right now we’re just hoping he wakes up a little easier today. With Troy, sometimes the only thing we can do is wait and see how his body responds.

This is the part of cerebral palsy most people don’t see. The procedures, the anesthesia, the recovery days, the pain we willingly walk through just to give our children a little more comfort and quality of life. If sharing Troy’s journey helps even one person understand this world a little better, then every post is worth it.

If you know Troy, love Troy, or support families living with cerebral palsy, please consider sharing his story this month to help spread awareness. 💚

03/25/2025

Don’t forget to wear your green tomorrow, March 25, to show your support for Troy and all the incredible Cerebral Palsy Warriors! Let’s spread awareness and stand together! 💚

03/22/2025

As we get closer to Cerebral Palsy Awareness Day, I just wanted to share a little bit more about what CP means to Troy. 💚

👶 Premature birth. Troy was born at 29 weeks & weighed 2lbs 5oz. He stayed in the NICU for 51 days before we could take him home.

There are different types of cerebral palsy, but Troy has cerebral palsy spastic quadriplegia, which affects both his arms & legs, torso & face. ✋🦵 Quadriplegia is the most severe of the three types of spastic cerebral palsy. Due to his high muscle tone, Troy must take two different types of muscle relaxers 💊 to reduce his tone & discomfort.

🚶‍♂️ 1 in 3 are unable to walk. Troy must use a wheelchair ♿ & other assisted equipment like a stander & gait trainer to be in an upright standing position.

🗣️ 1 in 4 are unable to talk. Troy is nonverbal. He depends on his communication switch, as well as his facial expressions, cries, & yells to communicate.

👀 1 in 10 have severe vision impairment. Troy has Cortical Vision Impairment & is legally blind. His vision has been described as if he sees the world like a kaleidoscope: a swirling mass of color that doesn’t have meaning or recognition. 🎨🔄

⚡ 1 in 4 have epilepsy. Troy was diagnosed with Infantile Spasms when he was only 6 months old & continues to suffer from epilepsy. He takes two different medications 💊 to control this.

🌙 1 in 5 have a sleep disorder. Troy has had trouble sleeping since he was a baby. He currently takes two medications to help him sleep. 😴💤

🥄 11% have feeding tubes. Troy got a feeding tube when he was 2 years old due to his inability to eat by mouth or drink from a bottle.

💩 Prone to digestive issues. As a result of his CP & inability to walk, Troy experiences constipation & severe gas pains. He regularly takes Miralax & Senna to treat this.

To help & support Troy, he has 5 Physical Therapy, 3 Occupational Therapy, & 3 Speech Therapy sessions a week. 💪🧑‍⚕️

Troy’s smile is contagious & lights up a room. 😄✨ He loves music 🎶 & has an amazing sense of humor 🤣. He may not speak, but he is fully aware of his surroundings & understands what is going on.

This is Troy’s Journey. 💚 You will see his challenges, but mostly, you will be amazed by his accomplishments. 🌟

💚

Tatiana Barboza Jarrell

03/03/2025

March is Cerebral Palsy Awareness Month! 💚♿

This month, we celebrate, educate, and advocate for those living with cerebral palsy—just like our amazing Troy! Every step forward, every milestone, and every moment of joy deserves recognition.

💚 March 25th is National Cerebral Palsy Awareness Day! Join us and by wearing green, sharing Troy’s story, and spreading awareness!

Together, we can make a difference—one conversation, one act of kindness, and one wave of green at a time! 💚♿

02/14/2025

So today, Troy had his routine alcohol and Botox injections.

Before the procedure, I spoke with his physiatrist (a specialist focused on the nonsurgical treatment of musculoskeletal conditions that cause pain and/or physical weakness) to go over where Troy would be getting his injections. As usual, we targeted his hands, arms, and hamstrings. We also decided to continue injecting his salivary glands to help reduce drooling.

Even though we’ve been doing this for 10 years, it never gets easier watching him go under anesthesia and wake up so uncomfortable.

The procedure lasted about two hours. Troy needed some oxygen since his levels were low, but they stabilized once he fully woke up. Unfortunately, waking up was miserable for him. He was in pain from the injection sites, and the alcohol injections left him feeling “hungover”—his breath even smelled like alcohol. They gave him Tylenol, morphine (twice), and Benadryl, but this part always breaks my heart. No matter what I do, he’s in pain and crying, and I feel so frustrated and helpless. The doctors and nurses look to me for answers, but all I can do is try to comfort him the best I can.

We’ve found that getting him dressed and into his chair helps calm him down since he knows that means he’s one step closer to going home. Once we got home, he rested, and we kept up with Tylenol to make sure he was as comfortable as possible. He should be feeling better soon, but this first day is always so tough—for him and for all of us.

We just have to keep reminding myself that the benefits of these injections outweigh this one really hard day. They help with positioning, range of motion, decreased pain in stiff muscles, reduced spasticity, greater ease in stretching, and improved tolerance of his braces.

Praying tomorrow is a better day—especially since he’s so excited for his Valentine’s Dance at school! 💚

01/07/2025

2024 Was a great year for Troy! We campaigned and he won the election for Middle School President! From posters, to stickers, cupcakes and star squishes we pulled out all the stops ⭐️

Couldn’t be more proud ❤️🤍💙 Tatiana Barboza Jarrell

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