What we’re up to… November 05, 2024 at 10:00AM

On this day 05.11.2016. I remember chaffing at having to wait outside in the corridor while rounds was happening. I remember hoping for what essentially would be a miracle cure. That Kai would develop the same as a typical child would. It wasn’t hard to imagine at that point. He didn’t have any tubes, and acted like what we assumed was normal three week old baby behaviour.

They weren’t wrong, but I wanted them to be. We couldn’t see the NKH symptom and we couldn’t imagine what they might be like. Now, on the otherwise, this was the best, the most well Kai ever was, but this was not his most happiest.

He did have happy days, days were he was able to show joy and delight and love (there were a lot of days were he just slept too, and days that were much, much worse). BUT, those happy days existed. He had NKH and he had happy days. Those things were both true.��Thank all the powers that be that they were. I find real comfort in knowing he had happy moments.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DB_E0EENdUa/