Bubbles & Bravery

Since bringing Frankie home almost a year ago, our world has revolved around keeping Frankie stable, comfortable, and growing the best we can here at home. But soon, we’ll be packing up everything that comes with medically complex life and heading to Nebraska to see Dr. Mercer and the intestinal rehabilitation team.

When I first started hearing other short bowel syndrome parents talk about Dr. Mercer and the team in Nebraska, something immediately clicked in my heart. Families consistently spoke about their willingness to think outside the box, collaborate across specialties, and truly look at the whole child, especially the kids who don’t fit neatly into a textbook case. Frankie has never been a textbook case.

We are incredibly hopeful about this opportunity for a fresh set of eyes, new ideas, and experienced specialists who have spent years helping children like Frankie. We’re preparing for surgery, consultations, long travel days, medical equipment logistics, and all the unknowns that come with taking a medically fragile child across the country for care. It’s exciting, overwhelming, emotional, and a little scary all at once.

And even while preparing for this trip, the day-to-day realities of complex medical care haven’t slowed down.

On Monday, Frankie had a central line break that sent us to the Emergency Department. Moments like that are terrifying because his line is literally lifesaving access for him. Thankfully, the line was repairable and we were able to avoid a full replacement, which was a huge blessing.

We also recently received his CPT vest, and it’s already been helping him mobilize secretions much more effectively to help prevent dangerous mucus plugs in his trach. Even so, we’ve still had a couple of emergency trach changes this month alone.

Life continues moving forward in beautiful ways too.

I was recently promoted from Senior Assistant Registrar to Associate Registrar, where I now oversee a team of four with plans to continue growing the team even further. Our office also recently received our division’s Outstanding Team Award after successfully processing the highest number of curricular changes we’ve ever received by our deadline.  I’m especially grateful to work for a university that has supported our family so compassionately through Frankie’s medical journey. They are allowing me to work intermittently and remotely from the hospital in Nebraska throughout the month of June so I can continue supporting my team while also being present for Frankie during surgery and recovery.

And in the middle of all the hard things, there’s also my little Henry bringing so much light into our home every single day.

Henry is in such a fun little phase right now. He absolutely loves Meekah and occasionally asks for Mickey Mouse too, which can be a little confusing. For a long time, Baby Shark held the top spot in his world, but Meekah has definitely slid into first place these days.

He also loves Danny Go and has picked up all kinds of dance moves from watching him. His fun little dances crack us up daily. He adores his daycare teachers and friends, and it’s been so sweet watching his personality continue to bloom socially. He’s curious about absolutely everything right now, especially “buggies.” In Henry’s world, almost anything remotely small or interesting qualifies as a buggy, even Spider-Man counts as one.

One of my favorite things lately is how much he loves books. He will happily sit and point to pictures while we read to him, especially in his favorite nature book. He gets so excited point at animals, weather, bugs, and all the tiny details on the pages. He’s also a huge fan of bubbles, both the outside kind and the kind that go in the bath.

His favorite words right now are “mommy” and “no,” which probably tells you everything you need to know about toddlerhood. And if you ask his favorite color, he’ll proudly tell you it’s “oranck.”

These little moments help ground us. Even in the middle of surgeries, appointments, trach emergencies, and long medical days, there is still so much joy, personality, laughter, and childhood happening here too.

Many people have asked how they can support us, and we are so grateful. Between travel costs, medical expenses, time away from work, lodging, supplies, and the ongoing realities of complex medical care, the financial side of this journey adds up quickly. If you would like to support Frankie’s journey to Nebraska, you can donate or share our GoFundMe here:

https://www.gofundme.com/f/help-frankie-get-lifesaving-intestinal-surgery

I also wanted to share a quick update about the Super Mom contest. I am still in the running and so grateful for everyone’s support. It’s been a challenge to balance campaigning for Super Mom and getting everything in order for Frankie’s big trip to Nebraska. If my candidacy in the contest doesn’t last much longer, as I narrowly made it into the Wildcard round, I’ll look forward to the opportunity to apply again in the future during a season of life that feels a little less medically intense and emotionally heavy as we head into this next surgery with Frankie. Being part of the contest at all has already reminded me how many incredible people have rallied around our family, encouraged us, prayed for Frankie, and supported us through some very difficult moments.

Every message, prayer, donation, share, and word of encouragement truly means more than I can explain. We are hopeful that Nebraska will be the beginning of something really life-changing for Frankie.

Amanda