Positives that are Sometimes Outweighed by the Craziness Part 2

The past 5-6 weeks have been a whirlwind, to say the least. We’ve been juggling a lot—Zayden’s first sleep study, ear tube surgery combined with a bronchotomy, and, to top it all off, a complete breakdown of our only vehicle. Oh, and the extended warranty? Yeah, it expired just weeks before the transmission decided to call it quits. Needless to say, this has been a heavy financial and emotional load to carry.

Zayden’s sleep study on July 21, 2025, was...well, let’s just say it wasn’t the best experience. The tech handling it was clearly not cut out to work with kiddos like Zayden. She was slow, unorganized, and didn’t seem to grasp the importance of staying on track with his feeding, meds, or his CDM1 needs. Despite us explaining how crucial it was to stick to his schedule, she brushed off our concerns, which made the whole situation even more frustrating. I reached my breaking point, ended the study early, and filed a formal complaint. No one else should have to go through that kind of treatment—it was beyond unacceptable.

And just when I thought we’d get a breather, nope. The next day brought a whole new set of challenges. Zayden’s therapists and I agreed that he needed some additional equipment to keep making progress, but getting what he needs feels like running in circles.

Let me tell you about the Creepster Crawler—it’s a device that could really help Zayden build up strength, giving him support so we can focus on teaching him crawling movements. Sounds great, right? The problem is, we’ve gone through four different DME companies. Each time, we wait and wait, only to be told they don’t supply it and we have to start the whole process over. It’s exhausting and feels like we’re stuck in an endless loop of referrals and letdowns.

And as if that wasn’t enough, we’ve hit the same wall trying to find a bathtub for Zayden that actually works for his needs. There’s this Orca tub with a Penguin insert that would be *perfect*. It has all the support he requires to stay safe and comfortable during bath time. But guess what? It’s been discontinued. Or it never existed. Or insurance won’t cover it. Or it’s only available internationally. Every time we get close, the goalpost moves, leaving us scrambling for a solution that doesn’t seem to exist.

Lately, I’ve been brainstorming ways to design or adapt equipment for kids like Zayden. It’s crazy to me that families are forced to make impossible choices—like considering care facilities—just because the right equipment isn’t available or doesn’t meet their needs. It shouldn’t have to be this hard to keep loved ones at home with the right support.

And now for the cherry on top: transportation. On July 29, 2025, while heading home from one of Zayden’s surgeries, our van decided it was done. No warning, no heads up—it just gave out. We were stranded in 118-degree heat, all because the transmission’s torque converter cracked. Turns out, Chrysler has known about this issue for years but never issued a recall. Instead, they created a relatively cost repair kit and kept quiet about it. Now we’re looking at repair costs anywhere from $6,470 to $8,790. It’s infuriating, especially since we’ve always relied on Dodge Grand Caravans and never had an issue like this before. At just 115,000 miles, I expected way better.

So here we are, pinching pennies and cutting out anything non-essential, while watching resources and support systems fall short for families like ours. It’s frustrating, to say the least, but we keep pushing forward for Zayden. He deserves it.