Miracle For Mila

08/08/2026

Today marks one year since our world was turned upside down. While we’re still waiting for literally any doctor to tell us Mila is going to be for sure okay, I wanted to take a second and reflect on how much she’s gained this past year. 🩷

She retired her walker, she’s limited falls to just a couple times a day, she’s learned to stand from the ground up without holding onto anything. Most importantly, her little smile could light up any room 🩷

I wouldn’t have survived this past year without our community’s support.

I’ve had a few people ask why I don’t post more frequently. For the sake of our mental health and our family, I try very hard not to live in this 24/7. The daily reminders can be all consuming and Mila doesn’t deserve that either. However, I’ll never forget who was there when we were in need 💕 sometimes I reflect on the handful of people I hadn’t even talked to before last August that became an absolute rock during this chapter. For today, instead of living in the dark, I’m choosing to celebrate those people, every miracle worker, and our Miss Mila Jane 🩷

07/13/2026

Here’s what we know for sure: Mila is a natural first born camera hog. She’s coming in hot with Twin A energy today. 😅💕

06/20/2026

Mila’s screaming FOUR ice cream today! Happy birthday, babe! 💕

06/16/2026

Dr. Fakhari and his team have been such an intricate part of our journey- please take a moment and share their fundraiser that Mila was asked to be a part of ♥️

https://secure.childrenshospital.org/site/TR;jsessionid=00000000.app20046b?px=3089033&fr_id=2650&pg=personal&NONCE_TOKEN=DF39648303B3E5F6882CDFB5223BBB59

06/10/2026

One day I’ll visit MA to live out my Salem Witch dreams but for now the Children’s hospital will have to do 🫠😅

If you want the long story short: genome testing (after 6 months) results aren’t in. PT was happy with her progress since October, Neuro was happy she had no indications of any regressions (and while being in limbo this is still our most exciting thing to hold onto)…

& lastly, we’ll have the luxury of returning for another apt with a different Neuro specialist in the near future.

& personally, I’m mentally and physically drained- our first air bnb host was a nightmare, we got to pack up and move in to two different places this trip. The beach is the closest thing to waste time at while visiting the hospital. This is an A+ experience for kids but exhausting for parents.

Oh and if you’re curious where Twin Sis is- she is being absolutely spoiled with 1:1 time with her Nana & Papa and we’re extremely thankful as our babe Elise just can’t hang at a hospital all day 😂😬 👸

05/16/2026

Mila Jane isn’t letting nothing hold her back from a water slide. Girls fearless 👸💕

05/04/2026

Apparently, therapy hit hard today 🥱

A little over a month until Mila takes on Boston again. I’m not anxious, you’re anxious. 😬😅

04/01/2026

As much as our newest state of limbo brings me constant anxiety - I think it’s important to celebrate the SPG50 chapter we were apart of. For whatever reason, the universe brought us to that world - and thanks to many of you…kids are being given a second chance right now.

Check out Cade’s Moms latest video- he’s getting his gene therapy today 👏🎉

67 likes, 17 comments. “It’s Proceedure Day! We have waited so long for this day to come. Cade receives gene therapy today! Thanks Rachel for keeping us calm”