One Week out from Expander Removal

​We are officially less than one week out from Rocco’s expander removal surgery. My mom, my Uncle Jim, Rocco, and I head to Chicago next Monday (5/18) with surgery on Wednesday (5/20). Papi will switch out with Uncle Jim on Thursday, and then my mom, papi, Rocco and I will head back home on Monday 5/26.

Mike isn’t traveling next week so he can stay back with Mikey. We’re so thankful we’re able to divide and conquer for our boys. 

Right now, Rocco is at 264cc in his scalp expander with one more fill to go. His expander is technically a 250cc expander, but it’s capable of holding more. Dr. Bauer encouraged us to fill beyond 250cc, especially after losing Rocco’s forehead expander. The more we can accomplish during this surgery, the better.

I’m trying to keep my expectations realistic. With only one expander, we won’t get the result we originally planned for just yet — but I know eventually we will.

My biggest prayer for this surgery is that they’ll at least be able to remove the rugous portion of Rocco’s nevus in the back — the itchiest and most uncomfortable area for him. I pray this surgery brings him some relief. And I pray the recovery is smooth.

Rocco honestly hasn’t been a good sleeper since he was about 4 months old, and I truly feel that was around the time his nevus started becoming more itchy. He wakes up every 3-4 hours every single night and as of this Monday he’s been waking up even more due to a combination of factors. On top of his nevus itching and a huge balloon putting pressure on his scalp, my poor guy was also attacked by ants on his little toes, feet, and legs. So now those are incredibly itchy too. 

One day we’ll all get some sleep again… but for now I’ll continue surviving on Starbucks Trenta iced coffees. 

As Rocco’s expander continues to increase in size, so do the stares. I’ve actually been pleasantly surprised though, because while we definitely get a lot of innocent staring, we have not once received a rude or negative comment or question. Most people stare, and when I make eye contact they’ll just sweetly smile.

Honestly, the people who ask the most questions are children — and it’s almost always because they’re genuinely concerned and wondering if Rocco is okay. It’s actually been really heartwarming to witness their curiosity and kindness, and I love explaining tissue expansion to them. Most of the responses are things like “that’s so cool!”

My all-time favorite reaction was from my friend’s little daughter after she saw Rocco following his first surgery. She sweetly looked at him and exclaimed, “Oh my goodness, his balloons are sooooo cute!!!!” From that moment on, whenever people stare, my response has become: “I know… isn’t he so cute?” Despite Rocco’s expander, we continue to take him out and about. He loves going places and seeing people.

Overall, Rocco has been doing incredible. He continues to amaze us every single day. He is the biggest champ, the bravest boy, and truly my superhero. Resilient Rocco. 💙

If you have a Rare Rocco shirt, we’d absolutely love if you wore it on Wednesday 5/20 to show support for our sweet boy. Please send me a picture or post and tag me on social media so we can see everyone rallying around him!

And for those asking about shirts — more are coming soon in both adult and kid sizes! Keep an eye out for a post on Facebook and Instagram with details.

As always, thank you from the bottom of our hearts for every prayer said for Rocco. Thank you for supporting our family, donating to Rocco’s GoFundMe, checking in on us, and loving our boy so well. This road hasn’t been easy, and the journey is far from over, but we feel incredibly blessed to be surrounded by such amazing people.

Please continue praying for safe travels, a smooth surgery, wisdom for the doctors, and healing for our sweet boy. God has carried us this far, and we trust He’ll continue to carry us through the next chapter too.