Baby Jon’s Journey

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. 💛✨

08/13/2025

We have some HUGE news to share! 💙

I know it’s been a little while since I last posted, but we have some incredible updates about our warrior boy.

Over the past couple of months, Baby Jon has made amazing progress — he started eating and drinking everything by mouth, and we haven’t had to use his GJ tube at all. And then… yesterday, his GJ tube fell out. His stoma closed up almost immediately, so we called the on-call doctor, and they had us come in today to see his GI doctor to check his weight and decide if surgery was needed to put a new tube in.

Well… his weight is up again, and his GI doctor made the call to leave the tube out completely. That means… NO MORE FEEDING TUBE!!! 🎉

This is absolutely huge for him, and we couldn’t be more proud. His GI doctor did send us home with some NG tubes and supplies, just in case he gets sick or stops eating, so we can avoid the ER and schedule surgery if needed in the future. But for now, we are celebrating this incredible milestone!

Our strong, determined boy is thriving — one step (and now, literally first steps!) at a time. 💪💙