AnswersforAshton

Days are flying by and Boston is going to be here before we know it. 👏🏻🫣

But we would love some help. 🤍 I’m reaching out because I know this community is full of amazing people with connections and experiences we may not know about.

Does anyone know of organizations, foundations, grants, or programs that help families travel for medical care, especially to Boston? Whether it’s assistance with flights, gas, lodging, meals, or other travel expenses, we’d be so grateful for any information.

If you’ve been through something similar, know of a nonprofit, or have any advice on resources we should look into, would you please comment below or send me a private message?

We’ve learned that sometimes the best resources come from families who have walked this road before us.

Thank you for continuing to pray for Ashton, encourage our family, and cheer him on. Every message, every recommendation, and every shared experience means more than you know. 💙

A long overdue update and a week of celebrating our sweet Ashton turning 10 years old. 💙🎉

Ten years of the biggest smile, the kindest heart, and a strength that most adults could only hope to have.

This past year has stretched him in ways no child should have to experience. Endless appointments. Blood draws. Tests. Different foods. Medications. Learning to live with a feeding tube. Tears. Frustration. Fear. So much trial and error.

And yet somehow… he still smiles.

Right now, we’re working on another big milestone—cutting back on his overnight tube feeds and getting those same calories in during the day. We even tried having him drink his formula by mouth instead of through his tube. Unfortunately, it was almost as if his body couldn’t handle it at that speed, and it went right through him.

So we adjust. We try something new. We keep moving forward. We’re trying to figure it out as best we can for him.

Since December He’s gained 6 pounds and is now around the 3rd percentile. 💙💙 To some, six pounds over this amount of time may not seem like much. To us, it’s six pounds that came with countless appointments, sleepless nights, tears, and victories that most people never see. We have hit another plateau for reasons we still don’t understand, but every ounce is hard-earned, and we’re incredibly proud of him.

This week, we had a phone call with the nutrition team in Boston that gave me something I haven’t felt in a very long time…

Validation.

For the first time, someone looked at everything and said, “No… you’re not crazy.”

She agreed that even without his overnight tube feeds, Ashton is eating more than enough calories. On paper, he should be gaining weight. The concern isn’t simply that he needs to eat more. Something is preventing his body from using or absorbing nutrition the way it should.

Those words brought tears to my eyes.

Not because we have answers—we don’t.

But because someone finally acknowledged what we’ve felt all along.

So now… Boston is in our sights. September is creeping up fast!

We’re hopeful. We’re praying. We’re believing that this next step might finally bring us closer to understanding what his incredible little body has been trying to tell us all these years.

Ashton, you don’t know it yet, but you inspire so many people. Your resilience, your determination, and your ability to keep smiling through so much remind us every single day what true courage looks like.

No matter what this next year brings, we’ll be right beside you. Always.

Here’s to years of fighting… and to hoping this is the year we finally get the answers you deserve.

We love you more than words could ever say. 💙🎂

Ashton update 💙

We’ve got something to celebrate… Ashton has officially entered the 50 lb club 👏🏻👏🏻 and has been holding steady between 51–53 lbs!!

After everything his body has been through, seeing that number stay up has been such a big win for us. 🥹 And I will say the other day was the first time I looked at him without his shirt off and felt like I could really see a difference, not every rib was so prominent and his collar bones didn’t seem to be sticking out as much. 🤞🏻

He’s been staying active too — swimming twice a week. His endurance has definitely taken a hit, which is hard to watch, but we’re hopeful this is just part of the rebuilding phase and that we’ll start to see muscle begin to grow with time. He loves swimming though so it’s great!

He’s also found a new love for basketball… and let me just say, the confidence is STRONG 😂 He will absolutely smack talk you while playing, by his own rules, so consider yourself warned. But honestly, I love seeing that spark and confidence in him.

We’re adding weekend workouts at Syphus Gym with some of his wrestling buddies, and we’re really hopeful this extra push will help us see if his body can not only hold onto weight, but start building muscle too.

And a huge win behind the scenes — tube placements have become so much smoother. What used to be really hard has turned into something we can manage without the same stress, and I’m so thankful for that for however long it lasts!

We don’t see doctors again until the end of next month, so right now we’re focusing on celebrating every step forward along the way.

He’s been feeling okay overall. He still has moments where he gets angry about everything he has to do somedays — and honestly, that’s understandable. We’re working on letting him express those feelings in safe, constructive ways while continuing to support him through it all.

As we look ahead, our biggest hope and prayer is that as we slowly begin to wean from the tube, his body continues not only to maintain but to keep gaining — and that we start to see real muscle build. 💪🏻 That will be the moment that helps tell us whether we’re truly turning a corner… or if this journey is going to require a little more time and patience as answers are looked for.

Thank you to everyone who continues to follow, check in, and support Ashton. We feel it more than you know 💙💙💙