On this day they also asked for an amino plasma panel, finally. The results would take a few more days to come back, though the request suspected a ‘blood borne organism’ (and also, weirdly, rubella), but it’s the little green bottle that looks at glycine. An amino panel would, in a few days, show toxic levels of glycine, confirming the the MRI results, leading to a diagnosis. I don’t know this, yet. I was just taking pictures of the nurses notes, so I could google them later.
Anyway. My poor bub. He was bruised, from all the blood they took. They did an xray, and an ultrasound and an eeg. He was put through all the things.
It has taken me literally years to look back through these photos. It was such a traumatic time. Instead of looking at these, I would usually turn to Kai, and hug him and love on him. But now he’s not here. And all I have are the memories in my heart, and the photos and videos. This time in NICU is no longer the most traumatic experience I’ve lived through, being without my boy is. And if photos and memories and love are what we have, then here I am. Gently, slowly taking in every single photo. Every moment when we were lucky to have him with us. (Not having him with us is excruciating).
Kai would have been eight this week. If you’d like to help celebrate his birthday, we’re raising donations into his memorial fund, with a long term goal that one
day, children born with NKH won’t need to experience this.
Please donate, if you can:
https://ift.tt/FOlNZy0
#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere
#theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBQnp5Bv5vN/
