Resilient Rory - Medical Needs Journey

Resilient Rory - Medical Needs Journey ❤︎ Rory's Mom ❤︎
The Life Of A Special Needs
& Medically Complex Family 🩺
Shashi-Pena Syndrome 1 of 50/60 Diagnosed
💌: [email protected]

06/04/2026

Rory got to start back at therapy and she was so happy about it. We’ve had a busy week, it’s her annual meeting for Early Intervention so we had assessments from OT, PT, Vision, and Developmental Therapist. Rory was doing amazing despite being sick the past two week. So happy we’re finally on the mend! Big big things coming soon I can’t wait to share with you all. Rory’s already changing the world at 1 years old. 🥹🥰

05/26/2026

Rory had a sleep study last week but she decided to not fall asleep. 😭😂 We headed home right after midnight and she fell asleep immediately in the car. Oh my stubborn girl.

05/18/2026

GUYS!!! Out of nowhere Rory decided to sit up fully on her own tonight. Dylan and I just watched speechless. We’ve been working so long and hard for this day. I’m honestly in tears in bed. My whole life is dedicated to helping Rory grow and find independence. I watch her work so hard in therapy 4 days a week. Nothing ever comes easy for Rory. Things that come to most easily, are so hard for her but she never gives up. She works so hard and radiates so much love and happiness. She is so incredible. I’m proud of her and so lucky to be her mom.

05/15/2026

Rory having the best time at therapy the other day. Rory’s starting to be much more familiar with her surroundings and gets excited when we get to her therapy room. She’s even recognizing her therapist voices and faces!! Big steps for our girl lately.

05/15/2026

Dylan’s been working a lot this week. He was gone the past two days from 4:30 am to 8:30 pm so he hasn’t been able to spend much time with his girl. Rory really missed him and got a lot of cuddles and giggles tonight.

05/15/2026

Thank you to everyone that reached out with resources to get Rory a parimobile mini explorer. We have a few leads for nonprofits that will help us. Thank you thank you thank you.

05/14/2026

Rory got fitted for her stander today!! This is the first day she’s EVER stood up. It took her a little bit to get adjusted to it but once we got moving she loved it.

05/10/2026

The best Mother’s Day ever.

Happy Mother’s Day 💐
05/10/2026

Happy Mother’s Day 💐

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.

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St. Louis, MO

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