Baby Jon’s Journey

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.

04/14/2026

04/10/2026

For our rare disease friends if you’d like to add your name as well

"Whenever I wear my 'Story' shirt, I feel I am wearing a collection of untold stories of fighters. It seems every name on the back of my shirt is whispering to me their story... and supporting me and telling me I am not alone in this. They seem to have my back, literally!" - Amelia R

04/06/2026

This Easter was so special 💛🐣

This is the first Easter Jon has been able to sit and eat food. Last Easter it was only his medical formula through his g-tube. Just seeing him sitting, eating, and being part of the moment… it’s something I used to wonder if we’d ever get to. Medical life changes what you celebrate. This might look small to some people, but for us, this is huge.
I’m so proud of him 💙
What did everyone have for Easter dinner?
And what’s something you always have every year? 🐰🍽️

04/06/2026

Happy Easter from Baby Jon💛🐣

Easter is about new life, hope, and fresh starts and that’s very real for us. Hope in our world doesn’t always look big or picture perfect. Sometimes it’s really small. It’s a little bit of weight gain. It’s getting through appointments. It’s watching him keep trying, even when his body makes things so much harder for him.
Jon’s life isn’t easy. He fights for things other kids don’t even have to think about. His health, his development, his little body just trying to keep up… it’s a lot. And it’s something we carry every single day.
But he’s here and that matters more than anything.
Easter reminds me that even in the middle of the scary, the exhausting, and the unknown… there is still hope. There is still purpose in his story. There is still so much strength in him, even on the hardest days.
Jon’s path is different. His life is different. But it is still so full of love, meaning, and strength. We’re celebrating him today. Every little win. Every ounce of progress. Every moment we get with him.
Happy Easter from our family to yours 💙🐰

04/02/2026

💙Today is Autism Acceptance Day 💙

Autism is part of our everyday life in our home. It is not something we only think about once in a while or talk about on certain days. It is in how we communicate, how we parent, how we understand our kids, and how we support them through the world.
Jonny’s sister, Carmen-Marie is autistic, and she shows me every single day how unique and beautiful the world can be when it is seen through a different lens. Jonny is still waiting for his official diagnosis, and Whitney, Jonny’s other sister, is in the process of being evaluated. All three of them are so different, and that is exactly what autism is. It is not one look, one behavior, or one experience. It is a spectrum, and every child experiences it in their own way.
In our home, autism can look like sensory needs, communication differences, routines that feel safe, big emotions, and incredible strengths. It can look like really hard moments and overwhelming days, but also so much growth, resilience, and love. It means learning to meet each of my children exactly where they are instead of trying to make them fit into expectations that were never meant for them.

That is why acceptance matters so much more than awareness.

Most people are already aware that autism exists. But acceptance is what actually makes a difference. Acceptance looks like giving grace instead of judgment. It looks like making space instead of expecting someone to act a certain way. It is understanding that behaviors are communication. It is supporting families instead of questioning them. It is seeing our kids for who they are, not who others expect them to be.

Acceptance means my children do not have to change who they are just to be accepted.

So today, and every day, I will always choose acceptance. For Carmen-Marie. For Jonny. For Whitney. For every autistic individual who deserves to be understood, supported, and fully accepted exactly as they are 💙

04/01/2026

🩵Baby Jon’s Journey Update🩵
I wanted to give everyone a full update on Jon and everything we currently have going on.
Medically, we have a few important things in motion. Jon now has an appointment scheduled with genetics at Golisano Children’s Hospital in Rochester. We are also working on getting him scheduled back in with neurogenetics after some scheduling issues, so we can continue the plan they already have in place for him.
GI has expressed concern about the way Jon’s stomach is protruding, which is something we have been worried about for quite some time. This could potentially indicate a liver issue or something involving his gastrointestinal system. They have ordered specific bloodwork to start investigating this further. Looking back, many of his previous hospital labs have shown abnormal levels related to his liver and kidneys, so we are hoping to get clearer answers soon.
Jon has officially outgrown his medical protective helmet, so a new prescription has been sent to his prosthetics clinic to get one that properly fits. This is really important as he continues to struggle with severe head banging and needs that protection daily.

He still has his braces for his feet, but they aren’t a main concern at the moment as they haven’t been making much of a difference anymore. We have also started to notice that the difference in the length of his legs, with one being shorter than the other, is becoming more obvious and is starting to affect the way he walks.
Feeding continues to be a challenge. Jon does eat some solids, but not nearly enough to sustain him, so he still relies primarily on his formula for nutrition. We are using the NG tube as needed and doing everything we can to avoid another surgery to replace the GJ tube.

We are also waiting for the paperwork for his autism evaluation to arrive. Once that is completed and submitted, he will be pushed to the front of the list for evaluation because of his medical and developmental history.

On the developmental and educational side, we are starting the process of transitioning from Early Intervention into CPSE since Jon will be turning 3 at the end of August. That means we’ll be setting up all of his evaluations soon, followed by a meeting to determine what school placement will best meet his needs.

I am really advocating for a specialized program for him. If the district does not agree, I signed up to start Pre-K 3 at Bloneva Bond in their special education program in the Fall. If that ends up being the plan, I will be pushing strongly for him to have a 1:1 aide at all times for safety due to his severe developmental delays, his feeding needs, being nonverbal, his lack of safety awareness, his risk of choking, his need for constant supervision, toileting support, ongoing self-injurious behaviors like head banging, and much more.
He is still receiving all of his therapies weekly, and while we are looking forward to this next step, it’s also emotional. His therapists have truly become family to us over the last almost 3 years, and we will miss them more than words can explain.

As always, thank you for loving our boy and following his journey. We are taking things one step at a time and doing everything we can to advocate for him and give him the best quality of life possible 🤍

04/01/2026

With Born Abel – I just got recognized as one of their top fans! 🎉
Born Abel has been a huge part of our story🩵

03/30/2026

We absolutely love Born Abel
Check them out and give them a follow🩵

DAY TWO of our EASTER EGGS-travaganza 🐰💐🐣

Day 2 Giveaway: a Maileg Pig and Elephant! 🐇🩷

We are drawing TWO winners TONIGHT! 🎉

This giveaway is open to our medically complex children, NICU families, and Angel Families. We are so grateful to be able to ship within the USA and Canada. If an international Born Abel family (outside of CA) is selected, a $20 gift card will be sent instead. 💌

Here’s how to enter:
🐰 Comment on our Facebook post and share a photo
💐 Fill out the form in the Facebook comments
🐣 Leave us a review on our page — we appreciate this SO much!
🐰 Share this post and make sure you’re following all our pages

✨ Please note:
All winners are announced each night in our Born Extra Facebook group — be sure to join! Gifts will be shipped to the address provided, and shipping times may vary.

📦 IMPORTANT: Please make sure your mailing address is complete and correct when filling out the form so we can get your gift to you without delays!

⚠️ Reminder: We occasionally have spam accounts — please do NOT click on any suspicious links.

Good luck, everyone! 🩷

03/27/2026

🚨 Please read and take action. This matters more than you think 🚨

Right now, Texas is involved in a lawsuit called Texas v. Kennedy that could seriously weaken Section 504 protections, including the integration mandate that helps people with disabilities stay in their homes and communities instead of being forced into institutions.

For families like mine, this is not political. It is personal.

I have a medically complex child. Community based services are what make it possible for my child to live at home, surrounded by love, safety, and dignity. Without those protections, families like mine could be pushed toward institutional care, and that is not only harmful, it is traumatic.

There is also something people are not talking about enough. Institutionalizing people actually costs more than providing care in the community. This is not just about human rights. It is also about responsible use of taxpayer money.

If these protections are weakened, families could be separated. Disabled individuals could lose independence and dignity. States could end up spending more money for worse outcomes.

We cannot go backward.

Please take five minutes today to speak up. Contact the Texas Attorney General and Governor and urge them to withdraw from Texas v. Kennedy.

CONTACT INFORMATION

Texas Governor Greg AbbottPhone (512) 463 2000 https://gov.texas.gov/contact

Texas Attorney General Ken PaxtonPhone (512) 463 2100 https://www.texasattorneygeneral.gov/contact-us

disaster-counsel@oag.texas.gov

COPY AND PASTE EMAIL YOU CAN USE

Subject: Please Withdraw from Texas v. Kennedy

Dear Attorney General and Governor,

I am writing to urge you to withdraw from the Texas v. Kennedy lawsuit.

The Section 504 integration mandate is essential in ensuring that people with disabilities can live in their communities rather than being forced into institutions. Weakening these protections would cause real harm to individuals and families by limiting access to home and community based services.

Institutional care is not only more restrictive and harmful to quality of life, but it is also significantly more expensive than community based care. Moving in this direction would increase state costs while producing worse outcomes.

Please consider the human and financial consequences of this decision and withdraw from this lawsuit.

Sincerely,
Your Name

If you are a parent, caregiver, healthcare worker, or just someone who cares, your voice matters. Even one call or email can make a difference.

Please share this so more people understand what is happening 💛

02/27/2026

Baby Jon finally learned how to sign “more!” We’ve been working on this with his therapists for so long. So proud of him!!

12/25/2025

Merry Christmas everyone!🎄🎅🏻🩵