03/05/2026
Update for those praying.....
Quick Hadley update for those following along and praying...
We’re still in the thick of labs, phone calls, and trying to connect the dots between several different teams. Some results are starting to give us a little more clarity, even if the overall picture is still… complicated.
What we’re learning right now is that her B12 levels shifted significantly and her carnitine is low. Even though she’s dealing with Hashimoto’s and Graves, those don’t seem to be the biggest drivers of how she’s feeling at the moment. The last treatment did help some, which was encouraging and also told us that at least part of this is autoimmune-mediated.
At this point it’s looking like a combination of her metabolic disorder, autoimmune stomach issues affecting absorption of B12 and iron, and increasing symptoms from small fiber neuropathy. The nerve pain has been worse lately and has started moving into her arms, not just her legs.
Honestly, just one of these conditions being off can make you feel terrible. Seeing all three flaring at the same time helps explain why she’s been feeling so awful lately. Sometimes as parents you wonder if it’s really that bad but these labs are confirming what she’s been trying to tell us. She really has been feeling as rough as she’s said.
The hardest part is that she’s so ready to just be a normal kid again. I hear her say that often. She loves volleyball and running and wants to keep up with her friends. And honestly despite how she feels, she does still keep up. She pushes through, says very little, and keeps going and then comes home and crashes. Watching her do that has taught me more about tenacity, courage, and grit than I could ever teach her.
Right now we’re trying to coordinate care between metabolics, neurology, and GI across three different hospitals, which feels a little like a wicked game of whack-a-mole. So if you’re praying, pray for wisdom as we keep piecing this together and maybe that all the teams keep playing nicely in the same sandbox while we try to get our girl feeling better.
Doesn’t normal kid stuff look good on her? Volleyball, friends, being a kid… this is what we keeping fighting so hard for.
We will trust, He will provide!