What we’re up to… October 17, 2024 at 10:00AM

On this day 17 Oct 2016. Today, Kai had an MRI, while they were still trying to figure out what was going on. This MRI would give the initial hints that would lead his consultants to NKH. For me, that MRI meant they pulled the pins out and I could get a cuddle in. Just a half hour, but oh my heart, my entire world focused on my little babe right there between my arms. I was so in love.

Kai wasn’t doing so well. His breathing had gotten worse and he was relying on the vent more than he was before. Also they told us that a lot of the tests that rule out infection would come back the next day. The ones that were treatable. After that we were looking at disorders that can’t be cured, just managed. I remember being so worried. So so worried. I was right to, knowing what I do about NKH now. But I also wish someone had given me hope about how beautiful life could be despite something like NKH. How there would still be so many bright spots, so many beautiful memories to be made.

Being here now, knowing that I only have memories left, I’m glad we made so many. That there were seven years worth of beautiful memories. I carry your heart with me (I carry it in my heart).

Oh, Kaikai. My arms ache for you.

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/nUtR9XN

#grief #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh from Instagram: https://instagr.am/p/DBOC3DFhJLe/