28/08/2026
Sometimes I hate posting updates because they seem to trend more negatively than positively but we know we have a village who cares. Overall, Levi is SO, SO happy. He is constantly smiling and loving life ❤️
…But we’ve had a little more thrown at us this week and it’s made my own heart a little heavier.
I was so ready for his weight check. It’s an easy 5 minute appointment, our easiest one. But Wednesday, we left feeling defeated again.
Levi is still losing weight and there is absolutely no explanation as to why. He is on a very high-calorie formula, meets his feeding goals every single day, and is doing everything we’ve been asked to do. Yet somehow, he is still losing weight, and his doctors are struggling to figure out where those calories are going.
He is currently below the 0.1 percentile.
…And then there’s his little punkin. 🥺 Because he has had to spend so much time laying on his back after surgery, his head is starting to get a little flat/deformed. We are now getting referred for a helmet as well.
His pediatrician gave me a frown as she added three more specialists to our list but I honestly laughed it off and said, “the more eyes the better at this point..” This baby’s team now consists of:
🫀 Cardiology
🫀 Cardiothoracic Surgery
🍼 Gastroenterology (GI)
🍼 Feeding Therapy
🫁 Pulmonology
😴 Sleep Medicine
👂🏻 ENT
🩸 Genetics
🪖 Cranial Orthotist / Helmet Specialist
🩺 Pediatrician
And somehow, through all of it, he is still just the happiest little boy learning to love his car seat 🥴🫠
Boy is resilient ❤️🩹💪🏻