Baby Jon’s Journey

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 🤍✨

11/25/2025

✨ Baby Jon Update ✨
Hey everyone, it’s been a little bit since our last update, so here’s the latest on our tiny warrior.
Jon had a checkup with his pediatrician today and thank goodness he did, because it turns out he has pneumonia. ❤️‍🩹 He’s had a cough that’s been getting worse. He always has a cough, which is pretty common in kids with the genetic disorder they believe he has, but this one felt different and mama instincts were right. He’s starting antibiotics for the pneumonia and we’re also doing his sick protocol that his pulmonologist gave us. Once the pneumonia clears, his pediatrician wants to start him on an antacid since it can help kiddos with that suspected disorder.
On the genetics front, we’re basically starting from scratch with neurogenetics in Rochester. They’ve been trying to get the results from Buffalo Genetics for over six months and nothing has come through, even with the pediatrician and neurogenetics office persistently contacting them. These records were needed before they can test for what they believe he has along with other conditions, and the delay is holding up possible treatment options. So we’re resetting and moving forward without the records. Not ideal, but necessary.
He’s also getting a referral to ortho to monitor his limb differences, especially his legs. They want him seen at least once a year, so that’s in the works. And we’re adding an autism evaluation through the Robert Warner Center. He’s already an established patient there, so it makes sense, but if they take too long, Rochester is ready to jump in and do the evaluation instead.
Our little guy is still the tiniest peanut around and still not on the growth charts, but his pediatrician is really happy with the progress he is making. There are always concerns, that’s kind of the soundtrack of our lives at this point, but we’re keeping steady, staying on top of everything, and making sure he gets every bit of care he needs. His pediatrician always laughs and says he’s such a popular little guy because he sees almost every specialist in the hospital.
Thank you all for loving him, checking in, and cheering on our boy. 💛 We appreciate every bit of support.

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. 💛✨