Baby Jon’s Journey

02/09/2026

💜 February 8–14 is Feeding Tube Awareness Week 💜

This week we are honoring something that has truly saved our sweet Jonny’s life… feeding tubes.

A feeding tube is a medical device that helps people get the nutrition, fluids, and medications their bodies need when eating by mouth is not safe, not enough, or not possible. For many medically fragile babies and children, feeding tubes are not temporary. They are survival tools. They are the bridge between barely getting by and actually growing, healing, and living.

Jon started his journey with an NG tube, then moved to a G-tube, then a GJ tube, and now back to using an NG as needed. Each type of tube has been a lifeline for him, giving his body the support it needs to grow and stay healthy. Without these tubes, Jon would not be able to maintain his weight, stay hydrated, or take the medications that help keep him stable.

Feeding tubes saved his life.
There is no exaggeration in that.
They gave him the chance to survive when his body could not do it on its own.

They are not a “last resort.”
They are not a failure.
They are not something to be ashamed of.

They are life-saving and life-changing.

Because of feeding tubes, Jon has been able to gain weight when he was failing to thrive. He has been able to get the nutrition his brain and body need to grow. He has been able to stay out of crisis. He has been able to be here.

This week we stand with every child, adult, and family who relies on feeding tubes. You are not alone. Your tube does not define you, but it is a powerful tool that gives you more days, more strength, and more life.

Thank you for loving and supporting Jon and for helping us spread awareness that feeding tubes are not scary. They are hope. 💙

12/25/2025

Merry Christmas everyone!🎄🎅🏻🩵

12/25/2025

Merry Christmas!!
Thank you Victoria for the wonderful Christmas gifts for Jonny and his siblings!! They are wrapped and put under the tree from you!🎄🎁

12/20/2025

Sharing this because Strong Memorial Hospital / Golisano Children’s Hospital isn’t just a building to us, it’s where Jonny receives all of his care and where so many of the people who feel like family work every day. Our hearts are heavy tonight. Praying for the officers who were shot, for their families, and for every staff member and patient currently inside on lockdown.

12/19/2025

Quick update 🩵
All of Jonny’s siblings have been sick this week, and within the past hour Jonny has also spiked a fever.
His 4 year old sister, Whitney, is now on day 5 of ongoing fevers, with a peak of 105 tonight. She has been stable otherwise. She’s being taken in to see her doctor during the day as a precaution due to how long the fever has lasted.
Because of Jonny’s medical needs, we’re watching him very closely. If his fever were to rise like Whitney’s, he wouldn’t be able to manage it at home and would need to be hospitalized right away. We’re also keeping an eye on him for any other symptoms or an increase of the symptoms he already struggles with.
Please keep Jonny and his siblings in your thoughts and hope for a quick, gentle recovery for everyone. We’re so grateful for all the love and support 🤍

12/14/2025

Baby Jon met Santa and Mrs. Claus today🎅🏻🧑🏻‍🎄🎄

12/13/2025

Hi friends 🤍
I’ve had a few people ask if I’d be sharing a Christmas wishlist for Jonny and his siblings, so I’m posting it here for anyone who wanted it. Absolutely no pressure at all, just an easy option for those who asked. We’re so grateful for the love and support this community shows our family, always 🎄✨
Thank you for cheering our boy on 🩵

12/11/2025

🐧🩵Baby Jon Update🩵🐧
Jon had both PT and OT today, and I wanted to share the updates his therapists passed along. He’s been working so hard, and both of them were really pleased with him.
Physical Therapy:
His PT shared that he’s doing very well. She’s focusing on strengthening his right leg and improving balance on his left side, since those continue to be his weaker areas. She’s also been practicing signing and saying “more” with him, and while he hasn’t done it yet, he’s trying, step by step.
Occupational Therapy:
His OT said he had a great session. He was engaged, playful, and excited to participate. They did a q-tip painting activity, and it’s becoming clear that he’s likely left-handed. His grasp still needs work, especially with the dry erase markers, but he made strong attempts.
When working with Potato Heads, he needed help using both hands, they did hand over hand, but he followed along well. She was very happy with his efforts today.
Jon’s OT told us about a Head Start program she found that accepts two year olds with disabilities like Jonny has and currently has openings. It’s also a five minute drive from our house! We all believe Jonny would benefit tremendously with this program, not only for his motor and early academic development, but especially because the program places a strong emphasis on nutrition and eating, which is incredibly important since he’s regressed again with eating.
This honestly feels like the piece he’s been missing. We were originally going to have to wait for him to start school in September when he turns 3 and would be eligible to attend a pre-k for children with a disability, but starting sooner would make a big difference for him. All of his therapists would be able to go to the school to work with him there, so he would still have the support he’s used to.
We also have several medical appointments coming up:
• A follow-up with genetics in Rochester
• A GI appointment later this month
• Pulmonology next month
We’re hopeful and continuing to advocate for everything he needs. Thank you all for supporting our boy and keeping him in your thoughts🩵

11/28/2025

Happy Thanksgiving from our little turkey, Jonny 🦃🤍
Today we’re feeling extra warm and grateful. Thanksgiving hits different when you’ve got a tiny reminder of resilience sitting right in your arms, and Jonny is exactly that, small but mighty, soft but fierce, quiet but world-moving.
We’re thankful for his contagious giggles, the way his eyes light up when he hears familiar voices, and even his stubborn streak. We’re thankful for every tiny milestone he fights hard for, every snuggle he gives freely, and every moment he reminds us to slow down and appreciate life in its sweetest, smallest pieces.
We’re thankful for doctors, specialists, nurses, therapists, and advocates who show up for him, care for him, and cheer him on. We’re thankful for the community that loves him so loudly. He truly is such a popular little guy, and we’re endlessly grateful for that love.
But most of all, we are thankful for Jonny himself.
For the strength he didn’t ask for but carries anyway.
For the joy he brings while facing battles too big for his tiny body.
For choosing us to be his people.

Jonny, sweet boy, you are our biggest blessing and our loudest “thank you” to the universe. We are so grateful for you, Jonny boy 🧸🤎

Wishing everyone a Thanksgiving filled with love, gratitude, good food, and good vibes.

Love,
Jonny & Family 🤍✨

11/01/2025

Happy Halloween 🎃

10/05/2025

08/28/2025

Happy 2nd Birthday to our miracle boy, Jonny! 🎉💙 You light up our world with your strength, your smile, and your sweet spirit. You’ve taught us more about love, courage, and joy in just two years than we could have ever imagined. We are so proud of you and everything you’ve overcome. Today we celebrate you, our little warrior, our sunshine, our Jonny. 💛✨