Adison

▶

▶ 220 ❤ 0 💬 0

This is the reality for so many families raising medically complex kids. Two products we rely on—AMT Mini ONE extensions and Whole Story Meals Pediatrics—have recently been out of stock/backordered. And when these aren’t available, we aren’t talking about a favorite snack or something we can simply swap out. These are medical necessities. We rely on them to feed our kids. And suddenly, we’re scrambling to figure out how we are going to get through the month, find an alternative, or safely transition to something new…with little to no warning. For kids who already have sensitive GI systems, feeding challenges, and bodies that don’t always tolerate change well, being forced into a sudden change isn’t simple. There is no “backup plan” sitting in the cupboard. There often isn’t a few months’ supply sitting at home. We are given roughly 30 days at a time. I want to be clear: this isn’t an attack on either of these companies. I genuinely value both products and the role they play in our lives. But the way situations like this are handled is incredibly disappointing. Why isn’t there a better backup plan for medically necessary products? Why aren’t families given more warning when a product is going to become unavailable? Why aren’t there systems in place to make sure families have enough time to safely transition? Why does it so often feel like our medically complex kids are the last consideration—not even an afterthought, but simply a side effect of a business or supply chain decision? I did call Whole Story Meals, and I was told their manufacturer was bought out and that they hopefully will be able to start taking orders again in November. NOVEMBER. For families who depend on these products, “hopefully” isn’t much of a plan. The Mini ONE extensions are thankfully back in stock now, but going a month without them was incredibly difficult. Our kids deserve better systems around the products they depend on to eat, grow, and stay healthy. This isn’t about blaming a company. It’s about asking why the system doesn’t have a better plan for the families who have no choice but to rely on it. #minione #amt #wholestorymeals #medicalmom #hie

▶

▶ 117 ❤ 0 💬 0

Tomorrow is a big day for our little miracle girl. It’s full of lots of anticipation. Sis is having an MRI done that is considered “routine” for HIE kiddos, but she’s also having one done of her spine. Since Marcy was born pain has been no stranger to her, and, as she’s gotten older, that pain has progressed. Days can be hard, somedays are great and you would never know she struggles so much unless you watch how often she depends on her stroller to get around. And other days, like today, it’s constant, she’s very agitated and on edge and hurting. We are hoping and praying that this MRI can give us some insight about the pain in her legs. My heart is VERY gaurded — as much as I wish it wasn’t. I have learned not to get my hopes up, and at the same time, still have faith. Confusing right? Anyways if you wouldn’t mind keeping our couragous fighter in your hearts and prayers it would mean a lot. We are asking specifically for thoughts and prayers on her toleration of the anesthesia, my that we can trust and have patients and understanding with whatever the results are, and that are anxieties during it will be minimal. Something her rehab dr. said was “it doesn’t matter what the MRI says, our goal is to support Marcy to help her reach her full potential, whether we see anything or not.” Those words burst walls I had put up since Utah. We have, Marcy has never, been treated so kindly and valued by medical providers. So whatever this next step holds it will all be okay, even if in moments it doesn’t feel like it will. All my gratitude -Adison & fam

▶

▶ 236 ❤ 0 💬 0

Children come in all shapes and sizes, and some are only here for a short period of time. Too short. When Jaxson died, our world shattered. So we tell tales about him, as one of the ways we try to heal, though this journey is never-ending. We wonder what he would be like, what he would be doing, what kind of brother he would be, what kind of son he’d be. Would he be an athlete? Would he be musical? Would have brown hair? We imagine the life that was meant to be, the moments we’ll never know, the memories we’ll never make on this earth. And somehow, in the middle of our ongoing grief, these little stories help us find solace in the darkness. We can’t wait to meet you someday, my boy. Oct. 15th is child loss awareness day. This day means a lot of things for a lot of different people. But we all share something in common, death, and love. Together we’re united in something no one should have to go through. Lighting a candle for all the families navigating this journey today. I see you. 🤍 #infantloss #miscarriage #infantlossawarenessmonth #lightacandle