We’ve had a really good stretch lately, and I’m thankful to be able to say that. Since coming home from his last hospital admission, Frankie has been making great progress.
He’s working incredibly hard in physical therapy and is determined to learn to crawl. He’s also been getting reacquainted with his gait trainer. Walking with his braces on isn’t exactly his favorite activity, but as always, he’s patient, resilient, and gives it everything he has. Watching him keep trying, even when something is difficult, is one of the many things that amazes me about him.
We had our pulmonology appointment and now have a more regimented plan for weaning his ventilator support. We are decreasing his pressure control by 3 every two weeks, and if he continues to tolerate those changes, we should be able to start short sprints completely off the vent in mid-September! That feels like such a huge milestone after everything his little lungs have been through.
His abdominal wound from surgery is also officially healed! And he’s proving that it’s much easier to try to crawl without his very large, prolapsed jejunostomy on his tummy.
Of course, life with medical complexity means there’s always another battle to fight.
Lately, it’s been with our durable medical equipment (DME) company over wound care supplies. Somehow I’ve found myself fighting harder over a medicated diaper cream than I ever imagined possible. It reminds me of the old ostomy days when we were constantly trying to find an appliance that actually fit him better.
Sometimes I stop and think about all the things I do now that I never would have imagined years ago. I’ve learned how to perfect the art of changing ostomy bags. I perform trach care and trach changes. I’ve used a resuscitation bag on my own child. I care for the central line in his chest that goes straight to his heart. I give him twice-daily injections, prepare IV and G-tube medications, mix his feeds, and serve as his full-time care coordinator, scheduler, insurance advocate, and supply manager.
Just today I was transferred between half a dozen different people while trying to schedule his semiannual MRI. Because Frankie has a trach and is ventilator dependent, even a routine MRI requires special planning.
“Yes, he needs a non-metal trach ordered.”
“Yes, respiratory therapy will need to change it.”
“No, the MRI isn’t sedated.”
Even after explaining all of that multiple times, I still found myself being passed from person to person until someone could finally figure out how to schedule him. It’s just another reminder that even the simplest appointments are rarely simple for medically complex kids.
Thankfully, there have been plenty of bright spots, too.
A few weeks ago, Frankie received his custom 3D-printed wheelchair through a program at Utah State University. We’re so excited to see what this opens up for him. It provides much more developmentally appropriate mobility than his stroller, and we’re hopeful it will give him greater independence as he continues making progress.
Henry also had his annual X-rays at Shriners to monitor his hemihyperplasia. We received wonderful news: there has been no increase in his leg-length difference. Because everything has remained so stable, he’ll now only need to be seen every two years instead of every year.
He’s also continuing to perfect his dance moves.
Danny Go! is still a favorite, but we’ve recently discovered Lenny Pearce and his Toddler Techno videos. Henry was especially excited to find out that Lenny has collaborated with his absolute favorite, Meekah. Elmo continues to be a regular in our house too, although lately Henry has become especially fond of Abby Cadabby.
His vocabulary seems to grow every single day. One of my favorite new words is “teacher.” He proudly says it over and over all the way to daycare in the van. He’s still a little shy about saying his own name, but hearing his little voice chatter about the people he loves melts my heart.
Both boys remain huge Toy Story fans. Frankie lights up whenever he sees Woody, while Henry is usually talking about Buzz and Jessie.
We’ve also been enjoying making summer memories together.
The boys participated in a neighborhood Fourth of July bike parade, celebrated Pioneer Day at a local pioneer museum where they washed laundry on an old-fashioned washboard with a bar of soap and danced to live fiddle music, and visited a nearby dairy farm.
Henry was completely fascinated by scrubbing socks on the washboard and hanging them up to dry. At the dairy farm, despite temperatures regularly climbing above 100 degrees, he loved seeing the cows and exploring the milk barn.
One of the highlights for both boys was meeting Harry, a giant fluffy Highland cow. Henry wasn’t entirely convinced Harry was actually a cow—probably because he wasn’t black and white—but he happily combed Harry’s long hair while Frankie smiled as he reached out to pet him and feel its soft, shaggy texture.
As much as we’ve enjoyed our summer adventures, I’ll admit I’m ready for fall.
The stores have already started putting out Halloween decorations, and with temperatures hovering in the triple digits, they’re making me long for cooler days even more. We’re looking forward to crisp mornings, changing leaves, and spending more time outside without melting.
Henry will also be starting his first soccer program at the end of August. Fingers crossed he enjoys it—and that Mother Nature decides to cooperate and cool things down a bit for the rest of us.
For now, we’re soaking up the good days, celebrating every little milestone, and continuing to take this journey one step—and one crawl—at a time.
Love,
Amanda and The Boys
Mandy, thanks so much for keeping us updated on your two beautiful boys. Love the photos!