Keeping up with Rocco

​Keeping Up With Rocco 

Rocco had the most amazing summer. He lived his best life at the ELC with his buds and learned so much. He especially loved his class water days every Wednesday!

Some of Rocco’s other summer highlights included our annual beach trip and the 2026 Nevus Outreach Conference and Reunion.

Our beach trip was one for the books. Rocco was at such a fun age this year to really enjoy the beach and pool. His favorite thing was running through the sand, and watching him have so much fun and squeal with excitement was the best.

The Nevus Conference was truly life-changing, and I could (and probably will) write a whole separate post about it. For now, I’ll just say this: for the first time ever, for a few days, Rocco wasn’t rare. He was just like most of the other people there. And I know he felt it. 💙

Before starting this next round of tissue expansion, we also had photos taken of Rocco to document where he is now and to capture the changes as he goes through each round of expansion. These photos will give us a way to look back and see just how far he has come throughout this entire process. They came out beautifully, and I’m really grateful we’ll have them to look back on. This is such a big part of Rocco’s story, and I want to remember every stage of it, even the hard ones

And that brings us to now.

Rocco’s next surgery, to place tissue expanders in his forehead and scalp, was originally scheduled for September 2nd. In an effort to keep him as healthy as possible leading up to surgery, we decided to keep him home from the ELC.

His last day was supposed to be Friday, August 21st, but I ended up keeping him home a day early because he was very congested and coughing a little. My mommy-spidey-senses were going off, and with surgery just a few weeks away, I wanted to get him checked out to make sure there wasn’t anything more we could do to get the cough and congestion under control.

I’m so glad I took him in because it turned out he had an ear infection.

There was no drainage, which is usually what signals to me that he has an ear infection since he has tubes. Apparently, his left ear tube is on its way out and was blocking his eardrum from draining, causing it to bulge. His pediatrician prescribed seven days of oral antibiotics in addition to antibiotic ear drops.

I immediately contacted the surgical team in Chicago. A few days later, they got back to me and said Rocco needs to be completely in the clear for at least two weeks prior to surgery, so we would need to reschedule. They also recommended that we take him to ENT to see if the ENT thinks his left ear tube needed to be replaced.

So, Rocco’s surgery has officially been rescheduled for September 14th. I’m thankful it’s not too far from the original date.

This past week has been spent changing and rearranging all of our reservations. Canceling and changing our flights was actually pretty easy, and I have nothing but good things to say about United Airlines. Unfortunately, because the flights are more expensive now, changing all of our flights ended up costing us quite a bit more. Lesson learned: pay the extra for refundable/changeable flights when you’re traveling for medical reasons! You just never know what might happen.

I was also really bummed to find out that the Airbnb we’ve been staying at won’t be available for our new dates. The owner has been absolutely amazing, though, and is rolling over what we already paid toward our December stay. There was a small cancellation fee, which I completely understand, but he has been so accommodating throughout all of this, and I am incredibly appreciative of him.

We found a new Airbnb that is close to the hospital. Of course, because the dates are so soon, it was quite a bit pricier than I would have liked, but we’re making the best of it. It’ll be a new neighborhood for us to explore, and we’re just adding it to the adventure.

It has also been hard emotionally. There is so much anticipation leading up to surgery, and rescheduling it feels like it just resets all of the anxiety that comes with it.

But at the end of the day, I know I would much rather be safe than sorry, and this is absolutely in Rocky’s best interest. I am thankful that his team is being so cautious and wants him completely healthy before moving forward.

When we took Rocco to ENT, they recommended that we ask his team in Chicago if, when Rocco has his expanders placed, ENT could also replace his left ear tube prophylactically since he will already be under anesthesia. They feel this could help prevent another ear infection during his expansion period.

Thankfully, the team in Chicago said that shouldn’t be a problem. So now we have a plan, and I feel really good about that.

And in the middle of all of this, Fr. Chris came to bless Rocco before his surgery. He spent time with us and prayed over Rocco and our family.

There is something so comforting about having Rocky blessed before surgery. It puts my heart at ease knowing that God is with him and that we are never walking through any of this alone.

Overall, we’re just rolling with the punches over here. Plans change. Flights change. Airbnbs change. Surgery dates change.

But God doesn’t.

We’re trusting Him through all of it and reminding ourselves that His timing is perfect.

And through all of this, I just want to say how incredibly thankful and appreciative for every single person who continues to support Rocky and our family. The financial support, the messages and check-ins, every text, every hug, every prayer. It all means more than I could ever put into words. Some days, it’s the tangible things that help carry us, and other days, it’s simply knowing that someone is thinking about Rocco and praying for him. We feel so loved and supported through every step of this journey, and we will never take that for granted. Thank you for continuing to walk alongside us. 

Love,

Jenny