Baby Jon’s Journey

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 💙

04/14/2026

Born Abel has done a lot for Baby Jon. Please take a minute to support them by clicking the link in their comments and voting for them.