https://linktr.ee/babyjonsjourney, https://www.gofundme.com/f/stand-with-baby-jon-aid-his-recovery?utm_campaign=man_shar

Baby Jon’s Journey, North Tonawanda, NY (2025)

06/11/2025

Switching to G/J today

05/29/2025

Today was not easy.

I don’t know why I ever expect any appointment with Jonny to be simple. He had his Complex Child Check-Up in Rochester today. The appointment was at 1:20… and we didn’t walk through our front door until after 7:30.

His pediatrician noticed the note from pulmonology about swelling in his leg and immediately became concerned. She examined him herself, saw the swelling and color changes, and watched how he screamed when his leg was moved. Without hesitation, she personally brought us to get X-rays and stayed with us the entire time. She was worried his hip might be dislocated.

Thankfully, the X-rays showed no fractures or dislocations, but that left us with more questions. We went back upstairs where she continued his check-up, gave him his vaccinations, and worked hard trying to get in touch with ortho. She believes his hip is either on the verge of dislocating or something is being compressed.

She also ordered an abdominal X-ray — and it confirmed what we feared: he is extremely constipated again. We have to double his meds to try to clear him out. If that doesn’t work, he may need to be admitted.

She tried for a long time to reach the orthopedic on call but had no luck. Thankfully, she was able to get us into pediatric orthopedic urgent care — but not for today. So… we’ll be heading right back to Rochester again tomorrow.

It’s been a long, stressful, and exhausting day. And tomorrow looks like more of the same. Please keep our sweet boy in your thoughts.

05/19/2025

💙 Baby Jon Update – May 19th 💙

Today we made the trip out to Rochester for what was supposed to be a simple pulmonology appointment to check in on Jonny’s breathing. But as we all know by now… nothing with Jonny is ever simple.

As soon as he was weighed, my heart sank — he lost weight again, just like I suspected. His pulmonologist immediately called for his GI doctor (who truly is an angel in scrubs), and she came right away.

After talking everything through together, we’ve decided it’s time to move forward with placing a G/J tube (gastrojejunostomy tube). For those who don’t know, a G/J has two parts:
•One tube goes into the stomach (G-tube) for venting air and draining excess fluids or feeds when needed.
•The other goes past the stomach and into the small intestine (J-tube) to deliver nutrition directly — which can be gentler on Jonny’s system.

This could be a big step forward for helping relieve his constant bloating and finally support some healthy weight gain. We’re praying this change brings him some much-needed comfort.

He’ll be going in to have it placed within the next few weeks. 💛

For now, we’re finally on our way home. Tired, emotional, but thankful for doctors who truly care and are fighting alongside us.

05/18/2025

💙 Baby Jon Update – May 2025 💙

It’s been a little while since our last update, and so much has happened with our sweet Jonny.

On May 6th, Jonny saw Neurogenetics in Rochester, and for the first time, we felt truly seen. Without us even bringing it up, they took one look at him and said they wanted to test for Russell Silver Syndrome—something I’ve been begging Buffalo to consider for over a year, only to be dismissed time and time again. Finally, someone listened… without us even having to say a word.

Unfortunately, Jonny has been struggling quite a bit lately. His left leg—his stronger leg—has been swelling repeatedly. It’s gotten to the point where even a gentle stretch during PT caused noticeable swelling. We also noticed tightness in his hip. We’re working with outpatient doctors now to get to the bottom of it, but it’s concerning and could point to a serious issue.

We’re also worried about his weight again. Even though he’s eating more by mouth, he looks thinner, and his bloating is worse than ever. We’ve had to stop his overnight feeds, as they’re just making things worse. Farrell bags aren’t working anymore, and venting with a syringe only helps a little. We’re going to talk with his team about possibly switching to a G/J tube to help him vent better and, hopefully, relieve some of his GI pain.

Through it all, Jonny remains our brave, resilient little warrior. We’re doing everything we can to advocate for him and get him the care he deserves. Please keep our boy in your thoughts as we continue this journey.

Thank you for standing with us, praying for him, and loving him through all the hard moments. 💙

05/09/2025

Baby Jon was featured in Abels Table today🥹🩵

05/03/2025

Some days are just really, really hard.

Today has been one of those days for Baby Jonny. He cried for hours, and we still don’t know why. He’s finally starting to settle a little now, but he’s still not acting like himself. As his mama, I can feel something’s not right—but I don’t know what it is, and that’s the part that breaks me.

Jonny is nonverbal and doesn’t currently have a way to communicate his needs. The older he gets, the harder that reality becomes. His needs are growing, but he still can’t tell us if something hurts, if he’s scared, or even what might make him feel better. We try everything, and when nothing helps, it leaves us feeling helpless and heartbroken.

This is what life can look like for medically complex and disabled children. And it’s what life looks like for the parents who love them fiercely. We become their voice, their comfort, and their constant, even when we don’t have the answers.

Please send a little extra love to Baby Jonny today. He’s been through so much, and days like this are just so heavy on his tiny shoulders. Your thoughts and support mean the world.

05/02/2025

Busy Day for Baby Jon!

Today was a big day for our little warrior!

This morning, Jonny had his appointment at Hanger Clinic to be fitted for his protective helmet. The appointment went great and was super quick! We’ll call them next week to find out if insurance has approved the helmet. Either way, we head back on the 22nd for his final fitting and to (hopefully!) bring it home. We’re so excited—this helmet is going to help keep him so much safer.

Jonny also had his very first speech therapy session today! Even better, his therapist is someone we already know and love—Whitney’s former therapist, who just adores our family. She’ll be working on some sign language with Jonny, and eventually we’ll explore AAC options to support his communication. Of course, he didn’t speak during the session since he’s nonverbal, but he still had a great time. He even made the sweetest little sound just for her, and it completely melted our hearts. He played with some of the toys she brought—which was awesome to see—and even tried throwing the heavier ones. His physical therapist would’ve been proud!

After speech, he had physical therapy with our favorite Miss Heather. She truly is the best PT we could ask for. Jonny worked so hard and we were both incredibly proud of him.

By the end of it all, he was completely wiped out. I placed him in his swing to hook up his feed, and before I could even finish, he was sound asleep—pacifier in hand, snuggled up. Just look at that peaceful little face.

We’re so proud of everything he accomplished today. You’re amazing, Jonny!

04/29/2025

Baby Jon and his siblings all received blankets from Snuggled in Love today. Such an amazing organization. They all love the blankets so much! Thank you❤️

04/27/2025

Please help us support our sweet friend Nevaeh Skye!

On July 19th, 2023, Nevaeh’s life was forever changed when she was hit by a reckless driver. She suffered a severe brain injury and third-degree burns. She spent a year at a children’s hospital fighting for her life, and now she is continuing her recovery in Albany, over 4 hours away from her home and family.

Her mom Shelly, her dad Greg, and their family are doing everything they can to stay by her side, but they need help.
Shelly and Greg are truly wonderful people — the kind of parents who would move mountains for their daughter — and they deserve all the love and support we can give them right now.

Nevaeh has already been through more than most of us could imagine and has undergone many surgeries. She is scheduled for yet another surgery this Tuesday as part of her long road to healing.

They are:
•Selling “NevaehStrong” bracelets for $2 each
•Collecting cans and bottles (drop-off at 3531 Ferry Ave — porch or garage — or they can pick up if you’re close!)
•Accepting direct donations to help with travel, care, and expenses

Every little bit helps this incredible family continue this long and difficult journey alongside Nevaeh.

If you would like to help, please reach out to:
•Shelly: 716-343-2917
•Greg: 716-343-3302

Her fight is our fight.
Let’s rally around Nevaeh and her family and show them just how much love and strength surrounds them. Please keep Nevaeh in your prayers especially as she faces another surgery this week.

04/26/2025

After a long search, we finally have some amazing news — Robert Warner Center found a place to send the script for Baby Jon to get his protective medical helmet!

Before this, RWC had called several different places trying to find somewhere that could help, but every single one told them they didn’t do helmets. It was incredibly discouraging. Thankfully, Jonny’s amazing Physical Therapist didn’t give up — she recommended Hanger Clinic to us! When she was over, we called Robert Warner Center together, and they immediately reached out to Hanger.

Good news — Hanger Clinic does the helmets! As soon as they received the script, they called us right away. We’ll be calling them back Monday to schedule his fitting appointment!

We are so excited and relieved. This helmet will be a huge step toward helping keep Jonny safe. Hopefully it will mean no more forehead bruises, painful lumps from head banging — and it might even help him with preventing him from pulling his hair out too. He deserves all the protection and comfort we can give him, and now we’re finally getting closer to making that happen.

Thank you to everyone who continues to support Jonny and cheer him on. Every step forward happens because of the love, persistence, and prayers surrounding him. We are so grateful.

We can’t wait to share pictures once his helmet comes in!

04/25/2025

A Big Step for Baby Jonny — Yesterday’s Win!

Yesterday was such an exciting and emotional day—Jonny’s physical therapist brought over a walker for him to try for the very first time. We ended up taking off the hip support because he kept leaning too far back and couldn’t get into the right position, but once we made the adjustment, he was ready to give it a go.

He can use it both posteriorly and anteriorly, though he does better with it behind him (posterior). With a lot of help from his physical therapist—using a harness to guide and support him—Jonny was able to take a few steps!

He still needs a lot of support and isn’t anywhere near ready to use the walker on his own, but that’s okay. Every small step is a huge milestone for our sweet boy. There’s still a long road ahead, but we are so incredibly proud of him and how far he’s come.

Please keep cheering him on—he’s doing amazing things at his own pace.

Baby Jon’s Journey

06/11/2025

05/29/2025

05/19/2025

05/18/2025

05/09/2025

05/03/2025

05/02/2025

04/29/2025

04/27/2025

04/26/2025

04/25/2025

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