Earlier this week, our boy had an EEG. It’s the first one in a few years; and it’s because his seizures have changed over the last six months or so. He’s still having daily seizures, and they’re still a thing that dominate our lives. We’re working out a new plan, and hopefully this eeg will help inform that. Poor bug looks exhausted because they need him to be sleeping (so this is at nap time, and he proper wants to be in bed, at home, not at a hospital with wires being stuck to his head).
It’s not the worst appointment, but I’m always torn. I’ve realised that I can turn down, or change appointments to suit what’s best for Mikaere. If they’re “just because” they can be done over the phone, I don’t need to stress my boy out by taking him into the hospital. If they’re going to distress him, but not inform any real change or aren’t prompted by any real symptoms (I’m looking at you “routine blood draws”) we decline, and don’t do them.
Lockdown has a lot to answer for, but one of the (very few) upsides was recognising the doctor/family authority relationship, and showing that actually, I do have some recourse to shield Kai from unnecessary in-person appointments. They’re not always what’s best for him, and advocating can look different depending on what he needs.
It also means that we’ve had significantly less hospital visits this year, which 🙌🙌🙌 Obviously, some appointments need to be in person, but I wish I’d known I could do this earlier. Hey ho!
#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
