Overjoyed with an overdue update.

Let’s start with Waylon’s first birthday party, which was a hit. Thank you to everyone who joined us, and an extra-special thank you to everyone who supported us for the CHOC Walk.

Choc Walk recap! Mitch, Waylon, and I left the house during the 4 a.m. hour to make it to the 5:15 a.m. start of the walk. Waylon was jazzed on the drive up. He was overjoyed to step into the park, hear the music, and see everyone dressed up and ready to go!

It was a moving experience. The last few months have brought up a lot of reflection, and the walk brought out a lot of emotion. It felt like another step toward healing. We’ll never forget that time, and we’re so glad we showed up in the way we did — for each other and for Waylon.

We’ll never forget what we went through or all of the people who supported us along the way. Of course, we could not have done it without our close friends and family who keep us in their hearts and stepped in when and how they did. There have been difficult days, but also an overwhelming sense of gratitude for our family and friends.

Waylon is such a blessing. He’s happy and loves exploring. He began walking shortly after his birthday. He’s throwing out words for a few of his favorite things: balls, dogs, the bath, his dada, and all things that are “up there” as he points to the world around him.

He’s fearless at the beach, running toward the ocean like he’s ready to surf.

He and his brother belly-laugh together and love sing-and-dance parties. They tumble around before bed, have their toy tug-of-war moments, and can’t get enough hugs and snuggles. Donavon is so excited to watch Waylon grow and shouts with excitement about his progress.

Part of why we held out on this update is we had some big appointments approaching : our pulmonology follow-up, our development follow-ups and of course Waylon’s expert cardiologist, Dr. Doshi. 

First, a slam dunk at the pulmonologist. Five months after Waylon’s last ultrasound of his diaphragm, he has had significant improvement — enough that we can call off our follow-ups with the pulmonology department. His left diaphragm is now fairly symmetric to his right, which is wonderful news.

It was a huge relief to have something I had felt was lingering finally resolve. They had been monitoring his diaphragm because there was nerve damage from his surgery, which is why he was required to stay on oxygen for six weeks after we returned home.

We’ll continue to follow up with his cardiologist, but for now, we’re taking in this good news and feeling incredibly grateful.

Throughout the last year, Waylon has had monthly visits from his physical therapist, OT and early education. He was considered high risk for developmental delays due to his health history so as a preventative measure we have been enrolled in services. They began weekly and then eventually tapered off to twice a month each. We felt fortunate to have an amazing support team and visits specifically centered around Waylon’s growth ~6x a month. We are closing a chapter and not seeing these amazing caregivers anymore and also couldn’t be more grateful as to where Waylon is at. Mitch and I received this letter as we were going to a concert at the Hollywood bowl. Mitch and I got happy tears out for this one.  

“We are very excited to share that Waylon has demonstrated meaningful progress across his developmental goals. He has worked hard, and we are pleased with the growth he has shown since his last reporting period.

Based on Waylon's current needs and progress, we are recommending a discharge from Early Intervention services at this time. Waylon has made significant developmental gains and is currently demonstrating age-appropriate skills across targeted areas. He has met many of his established goals and is functioning at a level where specialized Early Intervention services are no longer considered necessary to support his continued development.

We are incredibly proud of the progress Waylon has made and appreciate the dedication and support your family has provided throughout this process. It has been a pleasure working with him and watching his growth.

If you have any questions regarding the progress report or recommendations, please do not hesitate to reach out.

Thank you for allowing us to be part of Waylon's journey.”

Dr Doshi brought it all home during our recent visit. Waylon sat for 30 minutes, accompanied by an ultrasound tech, myself, some good snacks and his first viewing of Bluey as he got his ultrasound. Dr. Doshi was happy to report that Waylon’s heart looks great. His heart’s function, overall pressure and size all look good. And although we love and appreciate Dr. Doshi, we are happy we don’t have to visit the Choc cardiology department until June 2027. I mentioned the anticipation for the appts gets to me. She said these are objective measures, if you ever get worried all you need to do is look at Waylon and see how great he’s doing and that stress will go away. 

Thank you again to everyone who has loved, supported, prayed for, cheered us on, and shown up for our family. We’ll never forget it.