Legendary Smiles

08/18/2026

This past Sunday was Indiana’s turn to see the 100 Cleft Portraits exhibit!! It was hosted by the Cleft and Craniofacial team at Riley Hospital for Children at the The Children's Museum of Indianapolis

I have known Cleft Warrior Woman, the artist, virtually for many years and it’s surreal to meet her face to face..a truly irreplaceable moment!

Thank you to all of my family and friends who came out to support this amazing event and cheer me on as I represented Smile Trainand the Cleft Community Advisory Council.

This wouldn’t be possible without the American Cleft Palate Craniofacial Association - ACPA and all the other sponsors. We are grateful beyond words for you seeing individuals in the cleft community and highlighting them! This exhibition promotes acceptance, highlights resilience, and brings people in to understand what we go through in our cleft journey.

08/18/2026

07/27/2026

Cleft lip and cleft palate is a journey and not just a one and done surgery.

07/24/2026

Henry was born with a complete unilateral cleft lip and cleft palate.

🩷💚💜❤️🩶🖤🩵

07/20/2026

07/20/2026

We’re covering all things teeth related today for awareness today!!

Children born with clefts are prone to enamal hyperplasia, which leaves their teeth vulnerable to tooth decay. It’s not something you typically consider when you hear about cleft lip and cleft palate.

Henry has a considerable gap in his alveolar ridge, the extension of the upper jaw that holds the sockets of the teeth, because of his cleft. You can see the progression of how his teeth have changed over the years!!

We’ve had spacing issues, baby teeth pulled, teeth coming in in different places, a palate expander, phase one braces, and a bone graft.

His bone graft was done by an oral surgeon in April 2021. He took Henry’s own spongy bone from his hip and implanted it into the gumline. Your teeth need bone there to come through and Henry didn’t. They typically do bone grafts between 8-10 years of age.

Expanding Henry’s palate made me super nervous because of all of the work he’s had done on it since he was a baby. He did very well with the palate expander and because it shifted his teeth, he no longer bit his lip making mucocele cysts that needed to be removed by our ENT.

07/12/2026

Did you know a newly repaired palate (roof of your mouth) is as delicate as wet tissue paper?? That’s MAJOR pressure on parents/caregivers to not mess things up in the weeks of recovery afterward!

Two months prior to Henry’s initial palate repair, we started feeding therapy with an occupational therapist at Positive Results here in Kokomo. It was one of the best decisions we made for him! 🩵

We didn’t know Henry was tongue thrusting and not using his jaws to chew. Our therapist helped us teach him to drink from an open cup, a tender care feeder, and a sippy cup with a flat spout and no valve. Every surgeon has their own preferred post op guidelines, but a lot of the time children won't be able to drink from a bottle. We decided to go cold turkey and feeding him his last bottle EVER was very bittersweet!

I always say that if you can get through palate repair, you can do anything! It’s my litmus test 🤪 Henry’s had his palate worked on many times since that initial surgery. He’s had a while fixed, the entire thing taken apart and put together like a z shape, and had collagen and fat transferred to close off the remaining space allowing air to go up his nose.

07/05/2026

I had no idea how common variations of cleft lip and/or palate were before our diagnosis. It was absolutely out of left field and as any respectable parent does, you become well-versed in what your child will be experiencing 🧡



07/04/2026

I hope you see a lot of us in the cleft community post cleft facts, our stories with pictures, and educating others about all of the MANY factors of cleft care that most people don’t realize or consider.

Being a cleft mom opens your eyes to a vast and new complicated world of scheduling appts to manage all the things you need for cleft care. TBH it can lead to fatigue and burn out.

I’ve been there and I’ve had to learn to delegate the smaller things like routine appts to the eye doctor or a simple teeth cleaning. Obviously as a parent you’re making decisions on someone else’s behalf, but with cleft it adds many new layers to navigate.

What if you decide to do this technique over this one in surgery and it’s not successful. Now you’ve put your kiddo through surgery and recovery only to go back to the drawing board and have to find another way. Surgeries are not without risks EVER. The pressure is on YOU to decide whose hands you’re willing to place your child in over and over.

Advocacy can feel like a full time job, but it’s always worth it. You know your child better than anyone else!! You may feel rattled and maybe even scared to stand up to a medical professional or need to be brave enough to take a step back and get a second opinion first.

Speak up even if your voice shakes! Keep pushing forward! Be a fierce advocate and model what that looks like and then teach them how to advocate for themselves.

07/03/2026

Henry has been through a lot in his almost 14 years, but he knows we’re in this together!! 🩷 He is learning firsthand what it feels like and means to have a community to confide in, to share burdens with, and to gain insight from.

When I first got his diagnosis, I don’t think petrified was even a strong enough word, but advocating and finding people going through the same experiences was extremely helpful.