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Weston’s Way, 962 Barnett Highway, Houston, TX (2026)

10/07/2026

EXCELLENT REPORT FOR WESTON THOMAS TODAY! 🎉🥹🫶🏼

First of all… apparently we brought the wrong child to The Williams Syndrome clinic because EVERYONE kept saying, “Is this the same kid?!” 😂

The scrawny, spicy little man we left with in March, is now a smiley, friendly, chunky little social butterfly who apparently decided he was going to show everybody just how much he has grown. And grow he has!

📈 Weston is now in the 90th percentile on the Williams Syndrome growth charts AND the 22nd percentile on the regular growth charts! Everyone was blown away by his size. Needless to say, our little guy has been EATING. 😂

And then came the really big news…

❤️ WE ARE OFFICIALLY OFF DIURIL! 👏🏻👏🏻
Weston’s heart looks incredible. There is still no sign of stenosis, his blood pressures were perfect, and his VSD is still VERY small. So small, in fact, that the left ventricle—which has always been enlarged—is now BACK TO NORMAL SIZE.

THAT. IS. AMAZING. 🥹😭❤️

After everything his little heart has been through, hearing that today felt like such a huge victory.

Genetics is also going to take another look at his original sample and do some additional testing related to epilepsy because of the spasms he experienced. They don’t anticipate finding anything new, but we’re thankful they’re being thorough and making sure we have all the information we can.

We also got the official green light to keep working on those eating skills. They weren’t surprised by his appetite (because apparently Weston has never met a bottle he didn’t want 😂) and encouraged us to keep pushing purées and start transitioning toward Kendamil Toddler Drink while we also introduce whole milk and see how his little goat-milk-loving tummy handles cow’s milk. 🥛😂

💪🏼 And his strength absolutely blew them away. His ability to sit independently was a HUGE deal to them, and they said he is right on track for a Williams syndrome kiddo.

And then the words every special-needs mama dreams of hearing…

WE DON’T HAVE TO COME BACK FOR TWO YEARS. 😭🙌🏼

We’ll still be following with cardiology and neurology at UAB, but as far as Genetics/WS goes…

Our boy is doing AMAZING. 🥹🫶🏼

When we look back at how tiny and sick he was, how many hospital stays, surgeries, procedures, medications, therapies, scary diagnoses and unknowns we have walked through with him… today feels like one of those moments where we get to stop and say:

Look how far you’ve come, Weston.

You are strong. You are growing. You are thriving. You are meeting milestones. Your heart is healing. And somehow, through all of it, you have stayed the happiest, spiciest little boy we could have ever asked for.

We are so incredibly proud of you, sweet boy. ❤️

Weston continues to amaze us. 🥹💙

09/26/2026

To everyone who has loved me, prayed for me, cheered me on, and celebrated me this past year… this is my little “thank you.” 🥹💙

I may be too little to understand just how many people have prayed my name, but one day I hope I do.

This year has been a BIG one for me. I’ve had more doctors’ appointments than I can count, spent more time in hospitals than any little boy should, had some really hard days, and faced things that my tiny body never should have had to face. But through every hard moment, there have been people standing beside me — even people I’ve never met.

You prayed when my mom and dad were scared.
You celebrated when I reached a new milestone.
You checked on me when things were hard.
You encouraged my family when they needed it most.
And you loved me from near and far.

Because of you, my family has never felt alone.

So as I celebrate a full year of life, I just want you to know how incredibly thankful I am for every prayer, every message, every share, every hug, and every person who has loved my little life.

God has been so good to me. He has carried me through some really difficult seasons and surrounded me with people who have reminded my family, over and over again, that we are never walking this road alone.

Thank you for loving me before you even knew me.
Thank you for believing in me.
Thank you for praying for my health, my strength, and my future.
And thank you for celebrating every little victory right along with me.

Here’s to another year of growing, learning, laughing, making memories, and showing the world just how strong a little boy can be. 💙

Love,
Weston 🥹🫶🏼

09/22/2026

This strong willed little boy decided that his first birthday week was the perfect time to learn how to sit alone and try to stand!

When he stood up in therapy we were all in shock- he just smiled and clapped for himself 🤣

So thankful for the steroids coming out of his system, because we are finally seeing the many personalities of Weston Thomas 🫶🏼

09/11/2026

Today, we were reminded once again of the goodness of our God. ❤️

Weston’s EEG showed NO signs of spasms! 🙌🏼😭

We walked into UAB today carrying a lot of emotions. After the last few weeks, we had prepared our hearts for the possibility of hearing things we didn’t want to hear. Instead, we walked out feeling like we could finally breathe again.

We started the morning with an hour-and-a-half EEG, which thankfully Weston slept through like a champ. Then we met with our neurologist, Dr. Byrd, who gave us the news we had been praying so hard for — there were no signs of the spasms or the hypsarrhythmia brain waves that were present on his previous EEG.

And there was even more good news. His brain activity while sleeping and waking is starting to look more like a normal EEG. His little brain is healing. 🥹

After weeks of watching our sweet boy struggle through the spasms and the effects of the steroids, hearing those words felt like a weight was lifted off our shoulders. We know we still have a road ahead of us. We’ll continue to wean the steroids very slowly and carefully, and we know there may be bumps along the way. But for the first time in a while, we feel like we can see a little light at the end of the tunnel.

And we’re praying that as the steroids slowly leave his system, we’ll start to see more and more of our Weston shining through the fog again. ❤️

To every person who has prayed for him, checked on him, sent a message, encouraged us, cried with us, or simply kept our family in your thoughts — thank you. We truly could not navigate these uncharted waters without the love and support surrounding our boy.

Today, we’re celebrating the good news.
Today, we’re thanking God for answered prayers.
And today, we’re holding onto hope a little tighter. 💙

Keep shining, Weston. Your momma and daddy are so proud of you. 🥹✨

09/10/2026

Tomorrow morning, we head back to UAB for Weston’s follow-up EEG to see if the steroids he’s been on for almost three weeks have done what we’ve been praying they would do—stop the spasms.

Looking at this picture, my heart just breaks. 💔 My sweet boy has quite literally been through hell with these medications. His tiny body is swollen, he can’t sleep, he constantly wants a bottle but never seems satisfied, and he’s so incredibly restless—like his own skin is constantly crawling.

As his momma, it’s been so hard to watch him go through this. We know these steroids are powerful, and we know they’re doing what they need to do, but knowing that doesn’t make it any easier to watch your baby struggle.

And even if tomorrow’s EEG shows that the treatment worked, we still have another five weeks of slowly weaning him off the steroids ahead of us. We’re not quite at the finish line yet, but we’re praying that we’re finally headed in the right direction.

So tonight, we’re asking for prayers. 🙏🏼

Please pray that these steroids have done their job. Pray that his EEG shows the progress we’ve been desperately hoping for. Pray that his doctors feel confident in where he is and, most of all, pray that we get to bring our sweet boy home and start putting yet another incredibly difficult chapter behind us.

Weston has fought so hard. Now we’re praying that his little body can finally get some peace. 🤍

08/22/2026

Well, Weston apparently wasn’t quite satisfied with his spennanight in Mobile, so we made a trip to Children’s of Alabama for more answers. 💙

After getting home from Mobile, Weston’s spasms were getting worse. He was increasingly fussy, and that little gut feeling that every Momma knows just kept telling me that something wasn’t right.

Thanks to a wonderful NP friend Mandi Mathews Slone who loves my boy and encouraged us to seek a second opinion, we made the decision to take Weston to Children’s. And honestly, it has already made a night-and-day difference.

Unfortunately, the treatment regimen Weston was started on in Mobile was not the appropriate treatment for what his EEG was showing. We now know that Weston is having infantile spasms with hypsarrhythmia, a severe form of abnormal brain activity associated with infantile epilepsy that can affect brain development if it isn’t treated quickly and effectively.

Today, we finally feel like we have a plan.

After seeing several of Weston’s spasms themselves and reviewing his EEG, the neurology team here at Children’s is very confident in the treatment they’ve chosen. Weston has started the most highly recommended and effective first-line treatment for his type of spasms: high-dose steroids for the next couple of weeks, followed by another EEG to see how his brain is responding. From there, we’ll begin a slow taper over several weeks.

It’s scary. It’s overwhelming. And as his Momma, I wish more than anything that we could take this away from him. But we finally feel like we’re headed in the right direction, and that is such a huge relief.

Praise God for friends who love my boy like he’s their own. For doctors who listen, look deeper, and take the time to be thorough. For family who drops everything the second we need them. And for every single person who has prayed for Weston, checked on us, loved on him, or simply kept his name in your heart.

This little boy is SO loved. 🫶🏼

We are incredibly grateful for every prayer. Please keep them coming as we fight this head-on. We have a long road ahead, but we’re not walking it alone. 💙

08/19/2026

Well guys, when Weston Thomas does something, he does it BIG! 😅💙

This definitely isn’t the 10-month update I was hoping to give you, but I promise it has a very happy ending. 🫶🏼

Sunday morning, Weston was having breakfast when he suddenly started having what looked like seizure activity. We immediately packed up and headed to the ER at USA Women’s & Children’s because this had never happened before.

Thankfully, I was able to catch a video of his movements while they were happening. That video ended up being incredibly important for the doctors as they tried to figure out exactly what was going on.

Weston was admitted and placed on a 24-hour EEG so they could watch his brain waves and determine whether he was actually having seizures or if something else was causing the movements.

Unfortunately, the EEG confirmed that he was having seizures—specifically a type of epilepsy called infantile spasms.

Those were the quick, jerky movements we noticed during breakfast. But what we didn’t realize was that Weston was also having other seizure activity throughout the day and night that we weren’t seeing.

The neurologists believe we caught this VERY early, which is such a blessing. 🙏🏼

Weston was started on Keppra, and after just ONE dose, the spasms stopped. 🥹 We’re now adding another daily medication to help keep his seizures under control, but seeing such a noticeable difference in him after just one day was an absolute eye-opener.

And here’s the part that really gets me…

Over the last several weeks, Weston had started losing skills he had already learned. He stopped clapping as much, smiling as much, rolling over, mimicking us, and doing some of the other little things that had become part of who he was. As his mama, I knew something wasn’t right, and it scared me.

It turns out that regression can be a sign of infantile spasms.

BUT—there is HOPE. ❤️

As we get his seizures under control and his brain gets the chance to heal and develop, there is a very real possibility that he can regain those skills.

And we are already seeing it.

While this certainly wasn’t the 33rd birthday I had planned, I got to see Weston SMILE and CLAP for the first time in weeks. 🥹😭

And honestly? That was the best birthday gift I could have ever received.

My baby is still fighting. And so are we. 💙

PRAISE GOD for early detection, incredible doctors, medication that is already working, and the sweetest little boy who continues to show us just how strong he is. 🙌🏼

Thank you to everyone who has prayed for Weston, checked on us, loved on us, and continues to walk this journey with our family. We have felt every single prayer. 🫶🏼

Here’s to 10.5 months, a whole lot of unexpected plot twists, and hopefully MANY more smiles and claps to come. 💙

05/27/2026

✋🏼🤟🏼8 months of Weston Thomas!

Stats:
💪🏼Weight: 15lbs
📏Height: 26inches
🦷Teeth: 2
😜Attitude: happy and sassy
😴Sleep: soooo much better!
🐒PT: almost sitting on his own
🗣️Words: Hi, Dada
👏🏼Gestures: clap, wave, peek a boo
💙Loves: bath time, his feet, a mirror, riding on anything, being outside, reading, PawPaws puppet shows, all kinds of music

This boy lights up every room! He’s so happy, so chill, just wants to talk, play, snuggle and laugh! Once he’s mobile there will be no stopping him!
We go in a couple of weeks back to the cardiologist and hopefully can come off or decrease some of the heart and fluid medications. He also has a P*P follow up next week because this guy was hiding a double ear infection from us!

Overall he’s the biggest blessing and the littlest warrior 🫶🏼

05/24/2026

Our hearts are so full after the first annual Little Hearts, Big Steps Walk for Williams Syndrome Awareness. 💙

What started as a dream to spread awareness for our sweet Weston turned into a beautiful morning filled with love, support, community, and compassion. We truly could not have done this without every single person who showed up, donated, volunteered, sponsored, created, photographed, or simply stood beside us in support.

A huge thank you to our incredible vendors:
• Coconut Kisses
• Made New Designs
• Ashley Fulmer Rjsf & Amy Turner with Mary Kay
• Fairy Knots
• Oh My Tay Creations

Thank you to Alexandra Wagner and Benjamin West for the amazing face painting and tattoos that brought so many smiles to our little ones.

To Theresa Johnson Kilcrease — thank you for capturing every special moment so perfectly. These memories will be treasured forever.

Thank you to Printed Palace for creating the perfect shirts for our event, and to Shila Barton for making beautiful pins in support of our sweet Weston Thomas.

We are so grateful to the Jay High School ESE Department for sponsoring our event and helping make this day possible.

A special thank you to Signcrafters for donating our tee signs, and to all of our friends, family members, neighbors, and local businesses who donated so generously to the Williams Syndrome Association. Because of all of you, we raised an incredible $1,760 to be donated by 💚🩵

We also want to thank Donna Bullock and the City of Jay for the Proclamation declaring May as Williams Syndrome Awareness Month. That recognition means more to our family than words can express.

Most importantly, thank you to every person who came out to walk beside us, support Weston, learn about Williams Syndrome, and help make our first annual event so meaningful and memorable.

From the bottom of our hearts — thank you for loving our boy so well. We already cannot wait for next year.💚🩵

05/22/2026

Tomorrow is the day! ☔️ Rain or Shine ☀️ we will be walking to raise awareness for Williams Syndrome!

We hope to see you there 🎉

Weston’s Way

10/07/2026

09/26/2026

09/22/2026

09/11/2026

09/10/2026

08/22/2026

08/19/2026

05/27/2026

05/24/2026

05/22/2026

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