Resilient Rory - Medical Needs Journey

Resilient Rory - Medical Needs Journey Shashi-Pena Syndrome Awareness 🫶🏻
Everyday Life of a Special Need & Medically Complex Family 🩺
💌: 618samm@gmail.com

04/20/2026

Rory was sick last week and missed her therapy, we’re so happy she’s back! She was very grumpy but pushed through.

04/06/2026

Rory is very excited for therapy today. She’s rocking her new sunglasses. Rory has extreme light sensitivity and can’t open her eyes outdoors but these UV protected sunglasses have allowed her to see more of the world when she’s outside!

01/21/2026

One of the privileges of being a special needs parent is knowing your little one will be with you forever. It is bitter sweet but perspective is everything. Most parents have to raise their kiddos to leave the nest, I get to care for and cherish my girl for the rest of our lives.

01/14/2026

My whole world. I’m the luckiest girl out there.

01/14/2026

Rory has three teeth coming in!!! My baby no longer looks like a baby. 😭 She’s a little stuffy right now but the happiest girl today. She took a good nap after some major kick action & blowing bubbles.

01/08/2026

Hey friends!! Let’s talk Rory’s feeding tube.

I’ve had a lot of comments recently asking for more in depth videos about Rory’s syndrome so here’s our first! I’ve never done a vlog style video so it may take me a moment to get a hang of it. I hope you guys enjoy!

01/08/2026

Lazy mornings continue. Miss Rory cakes decided to stay up past midnight & slept in until 10:30 am. She is feeling so much better since we’ve gotten out of the hospital. Therapy says tomorrow, time to get her strength back!

01/08/2026

Our Rory girl doesn’t talk but she does communicate, especially when she’s excited or overwhelmed! Dylan worked from 6 am to 8 pm last night so when he got home, Rory was extremely excited. This is an example of how she communicates with us, we call it her little growl! Some kiddos with Shashi Pena Syndrome are verbal and others aren’t. It is all a very wide spectrum but Rory is one of the more severe cases. We hope as she grows that her vocabulary does as well but even if it doesn’t, we know exactly what she means when she growls to let us know how she’s feeling. 🥰

01/08/2026

We always take mornings slow. Rory loves to sleep in. We start the morning with sugar checks, medications, diaper changes, & tube feeding. Once we get all that out of the way, we usually snuggle and watch her bestie Rachel. We’re so thankful her Dad works so hard for our family and allows me to care for Rory full time.

11/27/2025

We’re going home!!! Yay!! 💛💛💛

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St. Louis, MO

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