Happy Birthday, Boys
I’m still wrapping my head around the fact that my babies are two. Two years of Henry’s wild energy, two years of Frankie’s strength, and two years of learning how to live a life we never expected, but now can’t imagine any other way.
We kept their birthday simple and full of the things they love most: playing and being surrounded by people who love them. Henry was in his element, running around, and just soaking up every second. Frankie joined in in his own way, watching, engaging, and just being part of it all.
The News from Nebraska
Shortly after their birthday, we got the update I’ve been hoping and fighting for. I connected with the surgical team in Nebraska, and for the first time, it felt like someone really saw Frankie’s anatomy and had a clear, thoughtful plan.
After reviewing his imaging, the surgeon believes Frankie’s colon is capable of functioning but is simply small from disuse. Instead of rushing into one big, high-risk surgery, he proposed something that makes so much sense for Frankie: a phased approach. We’ll meet with Dr. Mercer on June 3 at Children’s Nebraska for evaluation, labs, etc. and then go to the Operating Room on June 5 for the first surgery. He’ll reconnect his small bowel to the side of his colon to allow his colon to slowly adapt and ‘learn’ how to function again. Because his colon hasn’t been used, it’s smaller and needs time to build capacity and start absorbing properly. This step gives his body that chance without overwhelming it and potentially causing obstruction. This means he’ll still have an ostomy but his colon will now be in continuity. Having his colon back in use, even partially, should allow for better fluid and nutrient absorption, the ability to increase feeds, and a real chance at reducing TPN dependence over time. Then after several months we would go back for a second surgery to complete the full reconnection.
What’s striking is how different this plan is from what we were previously told by his local team. Before, the picture felt uncertain, limited, and honestly discouraging. I feel relieved that this strategy appears to work with his body not against it and offers a path forward that prioritizes long-term success.
We’re still planning to meet with our local surgeon. She’ll need to stay involved, especially in case Frankie needs surgical support once we’re back home from Nebraska. But for the first time in a long time, I feel like we have a plan that gives Frankie a real shot at progress.
The Reality of Advocating for Frankie
While I’m feeling hopeful about Nebraska, the day-to-day reality here hasn’t slowed down.I continue to advocate for Frankie constantly, especially when it comes to his GI care.
I’ve pushed for continued bowel rest because I want him going into surgery in the least inflammatory state possible. His local GI has shared that she would like to restart enteral feeds but also knows I’m not on board with that right now. And I’m not, because we’ve lived what happens when we push too soon. The last feeding trial didn’t just fail, it landed Frankie in the hospital with an ileus and ultimately led to his severe eosinophilic gastritis. We don’t have the luxury of trial and error in the same way. Every decision has real consequences for his body.
Right now, on bowel rest, he is the most comfortable and happy he has ever been. But I find myself constantly having to explain, re-explain, and defend decisions for a child that many providers don’t fully understand. Frankie doesn’t fit neatly into a textbook. His anatomy, his history, and his responses are uniquely his. And yet, I’m often met with textbook logic that doesn’t account for that.
That’s why getting this second opinion with Dr. Mercer and his intestinal failure team means so much. For the first time, it feels like we have a team looking at Frankie, not just a diagnosis. I’m praying that after surgery, we can finally develop a feeding plan that truly works for him.
The Other Pieces We’re Still Fighting For
At the same time, there are still so many moving parts in Frankie’s care. I’m still working through getting him a CPT vest. There’s nothing like being questioned by vendors about his diagnosis codes meeting the eligibility for devices he’s been prescribed. We’re still waiting on his gait trainer, which has been months in the making. And in the meantime, I’ve been working with a local group to see if we can get Frankie a 3D-printed toddler wheelchair.
There’s a lot of research that shows developmentally, he should be transitioning to a wheelchair at this age—something that properly supports his body and allows him to interact with the world at eye level—rather than being stuck in a stroller that doesn’t meet his needs. It’s just another example of how much of this journey is not just medical—but logistical, systemic, and constant.
The Kind of Support You Don’t Forget
As we started planning for Nebraska, we knew it would be a lot of work and financial gymnastics to accommodate the travel, extended stay, medical logistics, and all that comes with taking a medically complex child across state lines. We have been truly blessed by the amazing outpouring of support when we announced we needed this second opinion. Friends, family, and even people we’ve never met have given, shared, messaged, and supported us in ways that have truly carried us. Because of that generosity, we’re able to focus on getting Frankie the care he needs without the same weight of financial stress. You’ve helped make this trip possible for our family. There really aren’t words big enough to express how much that means to us.
Amanda
