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04/24/2026

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 💙💙💙

03/13/2026

This weekend is Regionals for Ashton and I would love if everyone could send him some extra encouragement. 💙

If you’ve been following his journey this year, you know it hasn’t been an easy one. Between endless doctor appointments, tests, learning to live with a feeding tube, and trying to keep up with the things he loves, it’s been a lot for an 9-year-old to carry.

On top of all of that, this wrestling season already started with a big challenge. Ashton moved into a new age bracket this year, which meant a big jump in weight classes — something we knew would make the competition tougher even before we knew a feeding tube would become part of his life.

Since then, practices haven’t looked the way they used to. There have been days he couldn’t wrestle because of the tube, days he didn’t feel well, and days where the emotions of everything he’s going through have been really heavy.

But Ashton keeps showing up.

He keeps stepping on the mat.

And this weekend, he’s heading into Regionals with a chance to qualify for States again.

Of course I want that for him — but not because he’s made it before.

I want it because of everything he’s fought through this year.

I want him to see that the tube he carries with him doesn’t define him. It doesn’t get to take away the things he loves. It’s just a tool helping him on this journey — not the whole story.

No matter what happens this weekend, I am already so incredibly proud of this kid. His heart, his determination, and his big personality continue to amaze me every single day.

If you see this, drop Ashton some good luck, prayers, or positive thoughts for this weekend. I know it would mean the world to him to feel all the support behind him as he steps onto that mat.

Go get it, buddy. We believe in you and love you so much! 💙🤼

03/07/2026

Big news in Ashton’s journey today. 💙

I got an email yesterday morning that honestly surprised me… Ashton is almost at the top of the waiting list at Boston Children’s Hospital and we are now scheduling our phone intake conference with their Pediatric Diagnostic Program.

When we first applied, I was told the wait could be months, so hearing from them this soon felt like a huge moment of hope.

For those who have been following along, this program specializes in kids who have complex symptoms that don’t fit neatly into one specialty. Their team looks at the entire picture and works together across different departments to try to find answers and build a clear plan moving forward.

After everything Ashton has been through over the past year — the weight struggles, the NG tube, endless tests, appointments, travel, and the emotional ups and downs that come with it — this feels like another door opening. 🙏🏻

And I have to say how incredibly proud I am of Ashton. Since starting the new higher-calorie formula he’s had a few stomach issues, but he has handled it like such a trooper. He’s also been working really hard on getting more comfortable with his feeding tube, and he has gotten so much braver about letting me put it back in. Watching him face things that would scare most adults with so much courage amazes me every day.💙💙

We don’t know what answers will come from Boston yet, but just knowing a team like this will be reviewing his case gives me a lot of hope.

Thank you to everyone who continues to check in, send messages, pray, and support our family. It truly means more than you know. 💙

We’ll keep you posted as we learn more.

02/20/2026

Catching up 💙

Last week we traveled to Cincinnati for his metabolic cart test and GI follow-up. The test showed that Ashton burns a higher amount of calories than normal even while at rest. In simple terms — his body is working overtime, even when he’s just sitting still. Reason why or if it’s related to his pancreas or something else is unknown.

The plan for now is to increase his overnight tube feeds to a higher calorie formula and monitor nutrition labs in a few weeks. We’re still waiting for the new formula to come in, and we have an in-person GI follow-up at the University of Michigan on Monday. We’re hopeful that increasing his intake will finally help the scale start moving in the right direction.

What I’m most proud of, though, isn’t a test result.

It’s Ashton.

We’ve been working on something that’s been really hard for him — getting more comfortable with his feeding tube. We’ve set one non-negotiable day each week where the tube comes out so he can practice letting me put it back in. Our biggest fear is that the tube will start to run his life or keep him from doing the things he loves. Watching him push through that fear and trust me anyway has been one of the bravest things I’ve ever seen.

And this weekend? He chose to wrestle in a dual meet tournament. 👏🏻 Kids in his bracket will actually be his weight. Which is exciting esp as a parent because watching him wrestle kids that weigh so much more than him but are the same agw is tough.He’s excited… and nervous. His endurance hasn’t been the same since he hasn’t been able to physically practice much during the week. But he still wants to step on the mat. That takes courage.

There have been some mental and emotional hurdles lately too. ❤️‍🩹The kind that are harder to explain and even harder to fix as a mom. I don’t always know what he’s thinking or feeling about all of these changes, and that part weighs heavy on my heart. I would take all of it from him if I could.

But what I do know is this: he keeps showing up. He keeps trying. He keeps choosing brave even when it’s hard.

We’re taking this one step at a time. More calories. More strength. More confidence. And hopefully, steady progress.

If you pray, we’d love continued prayers for weight gain, strength, and peace for his little mind and heart.💙

We are so proud of you, Ashton. Always. 🤍

02/11/2026

Cincinnati appointments today 💙

We’re at Cincinnati Childrens Hospital today for Ashton’s metabolic cart test and GI follow-up.

Yesterday we met with nutrition, and even with his overnight tube feeds, we haven’t seen the weight gain we were hoping for. That’s been hard to hear. When you’re doing everything you’re supposed to be doing — higher calories, enzymes, careful monitoring — you expect to see progress. And when it doesn’t come the way you thought it would, it’s heavy.

They’re switching him to a higher-calorie formula for overnight feeds, and today’s metabolic cart test will help measure how many calories his body is actually burning at rest. We’re hoping it gives us helpful information — not just more numbers, but direction.

I know many of you are following closely and cheering him on. Please know how much that means. This journey isn’t just about weight on a scale. It’s about trying to understand why his body struggles to grow and build strength the way it should.

We’re taking this one step at a time. Gathering information. Adjusting the plan. Not giving up.

Thank you for caring about our boy. 💙

02/06/2026

💜 National Feeding Tube Awareness Week 💜

This week is about visibility — and today I share our son, Ashton.

Ashton has an NG tube, not because he “won’t eat,” not because we didn’t try hard enough, and not because this was an easy decision. He has a feeding tube because his body struggles to do what it’s supposed to do — to grow, to gain weight, to build strength — despite years of trying everything.

Feeding tubes don’t mean failure.
They don’t mean giving up.
They don’t mean the end of normal childhood dreams.

For Ashton, his tube is a tool — one that will hopefully help keep his body going while we continue searching for answers. It allows him to go to school, wrestle, laugh, and keep showing up even on days his body feels heavy and unfair.

This journey hasn’t been simple. We still don’t have all the answers. We’re still fighting to understand why his body struggles the way it does. But what I do know is this: his feeding tube is not something to hide or be ashamed of. It’s part of his strength. And we are working with him to think that way and not allow it to run his life.

This week, we honor kids like Ashton — and families walking hard paths quietly — who show incredible courage just by getting through the day.

💜 Awareness matters. Compassion matters. And kids with feeding tubes deserve to be seen for everything they are — not just the tube.

02/02/2026

Today, Ashton wrestled. 🤍

This week he told me something that broke my heart.
He said he didn’t want to go to practice anymore because he just feels sad in his body — because he can’t do what everyone else can do right now.

And honestly… that’s heavy. That’s a lot for a kid to carry.

But this weekend I’m home (my last weekend home for a while because of work), and since he trusts me only to put his tube back in Ashton decided he wanted to wrestle in today’s tournament.

And he did so good. 💙

First match, he went all three rounds and wrestled harder than I’ve seen him wrestle in a long time. He was gassed — which makes sense when your body hasn’t had the chance to build endurance the way it used to. But he never quit. He never stopped fighting.

Second match, he was still winded and got outmuscled — but even then, he showed up and gave what he had.

His weight might not be climbing the way we want right now, but his heart? His grit? His fight?
Those keep growing. 💪🏻 The best part was him saying how he loved being out there and missed it.

I’m so proud of him for choosing courage today, even when his body feels heavy and unfair.
Watching him step out there reminded me that strength isn’t always measured in pounds or wins — sometimes it’s measured in simply showing up.

And today, Ashton showed up. 💙
Myway East Region

01/28/2026

Boston has replied 📨💙🤞🏻

Boston Children’s Hospital, and their team agreed Ashton’s case may benefit from a multidisciplinary diagnostic approach — meaning looking at his whole body, not just one system at a time. Unfortunately, their diagnostic program currently has a waitlist, ❤️‍🩹 so while we wait, we will continue to push forward with the additional testing and specialist input at Cincinnati Childrens Hospital that is upcoming. I did ask them again this morning if a metabolic or mitochondrial specialist would be appropriate to see while were down there to really use our time there to its full advantage.

This isn’t easy. Ashton is brave beyond words, but this journey has taken a toll — physically and emotionally. Our goal remains the same as day one: protect his well-being, find answers, and make sure he is never dismissed or forgotten.

We are not giving up. We are asking questions. We are opening every door we can.

Thank you for standing with us and helping us keep momentum when the system feels overwhelming. 💙

This pic 🥹 Ashton despite his size actually loves food and for years has said he wants to be a chef when he gets older. It was only fitting to purchase this shish kebab when we were admitted 🤌🏻rnjr

01/25/2026

The cutest snowman 💙 shoveling with dad and his younger brother in the blizzard outside!

📨 Boston emailed me today saying they have received all our paperwork and are discussing his case at their next team meeting! 🤞🏻

Weight wise things haven’t changed. He’s staying at that 47 mark. We head to Cincinnati for the metabolic cart test on the 11th.

Stay safe and warm out there everyone!

01/19/2026

Celebrating this Monday because big guy here has been hovering at 48lbs the last three days!! 💙 I thought it was for sure because he was a little backed up but even after going to the bathroom he’s hanging on which is the highest he’s ever been! 💪🏻 🏆 Over night tube feeds have been consistent since getting the tube back in so thats got to mean something right??

I don’t know what this means but it’s a small celebration in his long journey that’s worth shouting about! 💙💙

01/16/2026

Received the application email from Boston Children’s Hospital today ❤️‍🩹🤞🏻

I’ve also been back in contact with our GI doctor from Cincinnati children’s. After letting him know the recent conversations had with our u of m doctor he is ordering a metabolic cart test and told us to follow up with endo. When I reached out the endocrinologist we saw at Cincinnati they said they have nothing to do right now for Ashton and to follow up with GI. This is where I get confused being told to go to one then to the other and feel like I’m being passed around like a football. I wont lie it’s an emotional toll.

I don’t know what this new test is exactly but I did ask if there is anything more we can get done when we make the trip back down there. I’m hopeful they have more to offer while I wait to hear about our application from Boston since there’s been so many suggestions of tests I’ve never even heard of yet. ❤️‍🩹

AnswersforAshton

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