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Miss Amaya

This is Jaylynn, Amaya’s mom! I’m here to advocate for and connect with people similar to Amaya!

08/18/2025

Good morning everyone! Amaya was so excited for school this morning! She signed “car” before she even opened her eyes lol. We hope everyone has a great week and happy Monday!!

08/16/2025

✨ One Year Ago vs. Now ✨

One year ago today, Amaya had her 9th surgery. This one was to repair two hernias behind her belly button and close the G-tube stoma that had stayed open after removal.

The day before surgery, we had already been admitted to the hospital. It took a special access team just to get IVs placed in each arm so she could be cleared for surgery. Surgery itself went well, but the next day she wasn’t eating or drinking. I kept voicing my concerns, but the doctor brushed them off and sent us home.

That evening, she still hadn’t eaten and was becoming lethargic. By the next morning, we were back in the ER. Her blood sugar had dropped to 40, and she couldn’t stay awake. She was readmitted for another 5 days until she was finally able to eat and drink again. During that time, a feeding tube was even suggested again, but I knew Amaya was capable, and I fought for her. In the end, she proved me right. 🥲

Just a few months before that, in August 2023, she had her cleft palate repaired. That meant back-to-back summers of hospital stays and surgeries.

✨ But this August? No surgeries. 🙌🏼Thank you, God!

We still closely monitor her growth and do annual MRIs on her spinal cord. Last year there was concern that surgery might be needed to release it, but so far it hasn’t caused any issues, and I pray it stays that way.

To all of you who send donations, love, thoughts, and prayers: thank you. Truly. We may make this look easy from the outside, but the mental and emotional toll can be overwhelming. Your support carries us more than you know. 🤟🏼💜

08/14/2025

She is loving school and spending time with her friends!! 3 of her teachers have told me separately this week that they are SO impressed with her signing and can tell we’ve been working hard at home! I am proud 🥰❤️

08/10/2025

WE’RE BACK TO 170k!!! Thank you angels I’m so grateful for each and every single one of you!! 🤟🏼🩷

08/04/2025

First day back to school!! 🤟🏼🩷

08/03/2025

Sweet baby 🩷🩵

07/31/2025

Got her nails done 😆💅🏽

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