01/13/2026
Hello, everyone.
It is my hope that all of our friends and followers had a blessed and happy holiday season with their families. It's hard to believe that it has already passed and we are at the mercy of a New Year! Christmas is my favorite and I'm always a little sad to see it go. My tree is still up...don't judge me. It brings me joy and we still haven't celebrated Christmas with my mom and sister, or our homeschool friends. That's coming up this next week, and the tree can come down after that! Haha.
Our family was sick with something pretty much the entire month of December...strep, flu A, bacterial infections, ear infections and even pneumonia. Myla thankfully didn't require hospitalization this time, which I am so grateful for. Every time she gets sick, I hold my breath because I never know how things are going to go. That fear of being a parent of a former micropreemie just doesn't ever quite go away. She took this round like a champ, however, and aside from some very hard days with a high fever and very little appetite, we got through it. I'm always so relieved when we manage to ride out illnesses in the comfort of our own home.
Updates about Myla these days are fewer and farther between, I realize, but we are just busy living this wonderful life we've been given. She's really doing so phenomenally well, and our specialist appointments have gotten further and further apart. Myla has graduated from Speech therapy, although we still really struggle with eating. I have mixed feelings about it, but I can always rope her SLP back in at any time we feel like we are in crisis mode...and we aren't. She just doesn't eat a wide range of things, and maybe she just won't until she's older. Having feeding aversions or fears surrounding food is difficult, especially when it's compacted by the fact you're a toddler hitting food jags anyway.
Myla still has weekly physical therapy and wears inserts in her shoes to help her alignment and balance. I imagine we'll still be in PT awhile, as there are things she's still not "caught up" with yet, as far as gross motor skills. She has an upcoming Orthopedics appointment this Friday to check on her hips, a Pulmonology appointment and Genetics follow-up on her COL12A1 mutation in February, and an Ophthalmology appointment in March, where we'll see if her eyeglass prescription needs adjusting. I'm hoping when we see Pulm that they'll discontinue her daily Budesonide (nebulizer treatment) but we'll see. They may think she needs that for her lungs more long-term.
She is active, talkative, and so intelligent. She amazes me every day. I've started telling her the "story of Baby Myla" at night; we talk about how tiny she was when she was born, and what all the things are in the pictures she sees of herself and her time in the hospital, and the nurses and doctors and all the people who loved her through it. She has finally noticed her belly-button is different than her siblings' (due to the surgical scar) so we talk about how beautiful her little belly is and that that mark is from where her belly "got fixed" when she was little and sick.
She talks about how she grew big and strong in a box that kept her warm, and that Mommy was there with her every day and loved to hold her hand. Her favorite thing is to ask "Hold me like a baby" and when she says that, she means chest-to-chest, as opposed to being cradled. I love it, because it reminds me of our 3-hour-long holds in the NICU between care times. It's still her favorite way to be held and snuggled.
As she grows, I want her to always know her story and how hard she fought to be here; how brave and how strong and how amazing she is. We do daily affirmations: "I am strong. I am brave. I am kind. I am smart. I am loved."
Man, is she ever loved.
As we step into a new year, our hearts are full and our dreams are bigger. Last Friday, Miracles for Myla delivered our very first care packages to two different NICU families walking a road that still feels so familiar to us. It was such a joy to love on those families, and it reminded us just how many more are out there, sitting beside warm little boxes (incubators) praying, waiting, and trying to hold onto hope.
As Valentines Day and Mother's Day approach, we'd love to grow this mission and reach many more NICU families in the months ahead. If Myla's story has ever touched your heart, or if you feel led to help us turn pain into promise, we invite you to partner with us, through giving, sharing, or simply cheering us on or praying for us. Every single contribution, no matter the size, helps us remind a NICU family: you are seen, you are loved, and you are not alone.
Visit us at MiraclesforMyla.org to donate. Your contribution is tax-deductible.
Change starts with people like you. Your donation helps make a real impact, one action at a time. Together, we can bring little miracles to NICU families. Because we are a federally recognized 501(c)(3) organization, your donation is tax deductible.
