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AnswersforAshton, Cincinnati, OH (2026)

08/24/2026

💙 We are officially almost month away from Ashton’s appointments at Boston Children’s Hospital, and I’m feeling ALL the emotions. Excited, hopeful, nervous, overwhelmed… honestly, probably a little bit of everything.

This is a huge step for us in Ashton’s journey, and we’re so grateful that we’re finally getting the opportunity to have another team take a look at the whole picture and hopefully help us figure out where we go from here.

Because of the cost, unfortunately flying isn’t really an option for us. Flights for all three of us are over $2,000 🥴🥴 so we’re going to be making the long drive from Michigan to Boston the day before his appointments. 🚗💙

So I’m turning to all of you because I know someone out there may have some experience with this or helpful tips!

Does anyone have any knowledge of:
🏨 Hotels near Boston Children’s Hospital that are affordable or offer medical/patient rates or just that you’ve stayed at and enjoyed!
🍽️ Any must-know tips for staying in Boston with kids
🗺️ And of course… any fun things we should do while we’re there!

If you have a connection, recommendation, personal experience, or even just a tip you think might help, please send it my way! And if you don’t know of anything, that’s completely okay too. ❤️

As for Ashton… we’ve had a little bump in the road lately. He has dropped back down to 50 lbs, which is the first dip we’ve seen since stopping his overnight feeds about two months ago and transitioning to getting the same calories by mouth. He’s also had some stomach issues and pain over the past month.

At the same time, I have to remind myself that this kid has earned this summer.

After everything he went through this winter and spring — the appointments, procedures, tube, weight struggles, hospital visits and everything that came with it — he has had a very well-deserved summer of just being a 10-year-old boy. ❤️

He’s been able to enjoy being a kid, be active, play, swim, wrestle, play basketball and just have some normalcy without constantly thinking about doctors and tubes.

But now that Boston is getting closer, his anxiety has definitely started creeping back in. He knows another round of appointments is coming, and I can see the worry building.

So we’re going to spend these last few weeks of summer doing as much FUN as we can. Creating memories. Keeping his spirits high. Letting him just be Ashton.

Then we’ll make the drive to Boston and take the next step.

We still don’t know what answers Boston will bring. We don’t know if this will finally give us some clarity or open another chapter of questions.

But we’re going.

And for now, that’s enough. 💙

So if you have Boston tips, hotel recommendations or just something fun we absolutely HAVE to do while we’re there — please drop it below!

We’re going to make the most of this adventure. 🥹💙🚗

07/09/2026

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. 💙

07/05/2026

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. 💙🎂

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 💙💙💙

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