Baby Jon’s Journey

09/09/2026

Jonny’s appointments went really well today! 🩵 He was so happy to see his doctors and soak up all the extra attention. He truly loves his Rochester days😂
His neurology appointment was with his neurogenetics doctor. We are still waiting for the results of Jonny’s whole genome sequencing through pediatric genetics, but his doctor agrees that Russell-Silver syndrome is a reasonable clinical diagnosis. Even if the sequencing comes back negative, Russell-Silver syndrome does not show up through genetic testing in a large percentage of patients. His regular genetics team has discussed giving him a clinical diagnosis if that happens, and his neurogenetics doctor agrees with that plan.
We will follow up with pediatric genetics once the sequencing results are available. His neurogenetics doctor still recommends physical and occupational therapy. Jonny will receive PT, OT, speech therapy, feeding therapy, and autism-related services once he starts school.
Neurology still has not received the results or images from Jonny’s previous brain scan in Buffalo, so we’re debating whether to have new scans done.
His staring spells will continue to be monitored.
At his pediatrician appointment, we discussed his plan for starting school and his ongoing difficulties with growth. They also ordered bloodwork to check his kidney and liver function because of his distended abdomen and excessive urination. His urine has also had a stronger odor, and the amount he is producing seems excessive compared with how little he drinks.
He also needs a sleep study because of his snoring and difficulty breathing at night. His doctors want to determine whether something more than his tracheobronchomalacia may be contributing to his nighttime breathing problems.
Both appointments went well, we have a plan for the next steps, and Jonny was perfectly content being the center of everyone’s attention all day💙🥰

09/07/2026

We officially decided to go with Green Acres Preschool through The Arc for Jonny! 💙🥹
We go in on the 18th to meet with the principal and the head nurse and get some paperwork done. The nurse actually insisted that we come in on a day she would be there because she wants to meet Jonny face to face and learn everything she needs to know about him before he starts. I really appreciated that, especially with his medical history and everything that comes along with caring for him. It definitely made me feel even better about our decision.
We don’t have his official first day yet, but he should be starting very shortly after that meeting! We’re really excited and feel like we made the right choice for him. 💙
And tomorrow is Rochester day!🚗 We have two appointments tomorrow. He’s seeing his neurologist first and then has his complex child checkup with his pediatrician.
He’s actually starting to enjoy his Rochester days because of all the attention he gets while we’re there. 😂🥰 He definitely knows how to work a room at this point.
I’ll give everyone updates after his appointments tomorrow! 💙

09/02/2026

Big update for Jonny!

On Thursday we’re going to tour Green Acres, a special needs preschool through The Arc.

Jonny was already accepted into Empower, and honestly we thought that was where he was going to be starting school. We already know Empower and have had a good experience there before, so we felt pretty comfortable with that plan.
Everything was set up for him to start at Empower, then the school district called and told us that we needed to contact Green Acres through The Arc, set up a tour, and consider their program too because they felt it could be a more appropriate setting for Jonny and might have something different to offer him. So this wasn’t us randomly deciding to look at another school or still being undecided about Empower. We thought the decision had already been made. The district basically told us that before moving forward, we needed to go through the process with Green Acres too. The more I learn about Green Acres, the more I understand why they were so insistent that we look at it for Jonny. It seems much more geared toward kids who have a lot of different needs going on at once, especially kids who have medical, physical, developmental, communication and feeding needs like Jonny does.
They have PT, OT, speech, feeding support, and even vision therapy/services right there at school. They also have nurses on staff throughout the day. One of the things I really like about this preschool is that they can help get Jonny his new leg braces at the school. He outgrew his current ones, and we haven’t been able to get him fitted for a new pair yet. The orthotist can come right to the school, fit him there, and work with his PT on everything he needs. That setup could make such a huge difference for us because so much of his care usually means extra appointments, traveling, and trying to coordinate everything separately.
It seems like Green Acres has a little more of a medical and therapy-based setup, which is exactly what Jonny needs. His needs are so much more complex than just needing some extra help in preschool.
Another thing I really like is that Green Acres is through The Arc. Green Acres itself is preschool, but The Arc also has special education programs that continue through K-12. Obviously we have no idea what Jonny will need years from now, but knowing there are options there for him after preschool if he continues needing a more specialized school setting gives me a little peace of mind too.
It’s definitely a lot to think about because we were already set on Empower, but at the end of the day I don’t care which school name is on the building. I just want Jonny somewhere that understands all of him and can give him the support he needs to be safe, learn, communicate, grow and be as independent as possible.

So Thursday we’re going to check it out, meet everyone and see how it feels for him🩵

I’ll update everyone after his tour!

08/28/2026

🎉💙 BABY JON IS THREE! 💙🎉

Today our sweet Baby Jon turns THREE! 🥹🎂

It’s hard to believe that the little baby so many of you have followed, prayed for, cheered on, and supported through so much is already three years old.

The last three years have been quite the journey. Jonny has faced hospital stays, feeding tubes, procedures, endless appointments, specialists, therapies, feeding difficulties, developmental delays, and more tests than we could ever count. His life has looked very different from what we imagined when he was born, but along the way he has shown us just how strong and determined one tiny person can be. 💙

We’ve waited a long time for milestones other families may never have to think twice about. We celebrated sitting, standing, and eventually WALKING! 🥹 He still isn’t able to communicate with us, still struggles significantly with eating, and still has a long list of medical and developmental challenges that we navigate every day. There are still plenty of unknowns and plenty of milestones we’re waiting for, but Jonny continues to do everything on his own timeline.

If there’s one thing we’ve learned over these three years, it’s that there is no such thing as a “small” accomplishment in Jonny’s world. Every new skill deserves to be celebrated. 💙

And today, we’re celebrating the biggest thing of all: HIM!

Our silly, stubborn, sweet, Paw Patrol-loving Baby Jon is THREE YEARS OLD! 🐾🎈🎂

Thank you to every single person in Jon’s Joy Squad who has followed his journey, celebrated his victories, checked on him during the hard times, and continued loving and supporting our little guy. It means more to our family than you know.

Here’s to another year of doing things on Jonny time. 💙

Happy 3rd Birthday, Baby Jon! 🎂🎉🐾

06/19/2026

Today was a big day for our sweet boy. 💙

Jon had his autism evaluation today, and he was officially diagnosed with Autism Spectrum Disorder. Today also happens to be Autistic Pride Day! This wasn’t unexpected for us, but having answers and a plan moving forward is always helpful.
At this time, the team did not assign him a level. Because of where he is developmentally and all of his other medical and developmental challenges, they don’t feel it’s appropriate to determine that yet. They told us they will reevaluate in 2 to 3 years and decide on a level then.
Jon will continue seeing his autism specialist every few months at Robert Warner Center, which is amazing because she has been his developmental specialist since he was released from the NICU. She has been part of his journey from the very beginning, watching him grow, celebrating his progress, and helping us navigate challenges along the way. Having someone who knows him so well continue to walk beside us means the world.
His dad and I will also be attending a parent training class in the coming weeks. This is something we didn’t have to do with his big sister, Carmen, but we are looking forward to learning anything and everything that can help us better support Jon and help him thrive.
At the end of the day, autism is just one part of Jon’s story. It doesn’t change who he is. He’s still our goofy, determined, sweet little boy who lights up our world. This diagnosis doesn’t make us love him any more or any less. It doesn’t take away his potential, his personality, or all the amazing things that make him Jon.
We know there will be challenges ahead, just as there have been with many of his other diagnoses, but we also know there will be victories worth celebrating. We will continue to meet him where he is, advocate for him fiercely, and celebrate every milestone, big or small.
Autism isn’t something we view as negative. It’s simply another piece of the beautiful, unique person our son is becoming, and we can’t wait to see what his future holds. 💙♾️

06/17/2026

As a parent of a medically complex child, this is heartbreaking and terrifying to me.
Children in the PICU are critically ill. Their conditions can change in seconds, and when those moments happen, they deserve to have a board-certified pediatric intensivist physically at their bedside, not available only through a screen.
This petition is NOT about closing pediatrics. The pediatric department and hospitalist team will continue caring for children who are appropriately admitted to their service. What is being lost are the in-person PICU physicians who provide specialized, life-saving care to the sickest children.
Our children are not a financial calculation. They are our sons, daughters, grandchildren, classmates, teammates, and friends. They deserve immediate access to the highest level of care when their lives are on the line.
Please take a moment to read, sign, and share this petition. Even if you never need the PICU, you would want it there if your child ever did.
Our kids deserve nothing less.

Maintain bedside Pediatric ICU Physicians at Community Medical Center

05/31/2026

Proud to be a Born Abel Friend of the Month for May 🩵😀

05/29/2026

Please consider donating to help our see sweet friend Kylie have the most beautiful funeral she deserves.

I am raising money to help give my two year old granddaughter, Kylie, the funeral she de… Dana Overfield needs your support for A Beautiful Farewell for Kylie

05/27/2026

05/26/2026

A little Jonny update 💙
Last week Jonny had his first appointment with the Rochester genetics team! This is a different team than his neurogenetics specialist in Rochester. First of all, they thought our little man was absolutely the cutest 🥹 They were wonderful and made us feel so heard.
After examining him, they told us he meets every physical marker for Russell-Silver Syndrome along with the developmental and internal symptoms. They were shocked that genetics in Buffalo had completely refused to test him for it. As they looked him over, they also pointed out several physical deformities we didn’t even realize were there, including that his little pinkies are deformed.
They didn’t waste any time and did bloodwork right there during his appointment to send out a genetic panel immediately. Jonny did AMAZING and didn’t cry one bit! They even got all three vials in one try, which was a huge relief because getting enough blood from him is usually difficult.
They also feel there is likely more going on genetically than Russell-Silver Syndrome alone, so they want to do additional testing in the future.
Jonny has lots of appointments coming up too! In June he has his autism evaluation, and his developmental doctor at Robert Warner is going to be part of the evaluation team since she has followed him since birth and has been waiting for him to reach the right developmental age for evaluation. He also has appointments with his neurogenetics specialist and pulmonologist, so we’ll be making another Rochester trip and staying overnight at the Ronald McDonald House. We also need to get him fitted for a new helmet ASAP because he outgrew his old one, and we’re working on scheduling preschool evaluations so he can hopefully start a special needs program this fall.
Our little guy continues to prove just how strong he is. Tiny, mighty, and stealing hearts everywhere he goes 💙