At this point I was still admitted to the hospital, sleeping down the hall as my heart was being irregular. I remember the idea of not being at the hospital with our baby was inconceivable. There was a lot of crying. Faith and Fortitude, that’s what we used to tell ourselves.
Kai’s brain activity is abnormal, they still were sticking the little (CFM) pins in his head to measure things, which meant we couldn’t hold him. I remember that they had planned to do an MRI in the next day or two, and would take the pins out, which meant we could hold him. I was desperate, desperate to cuddle my babe.
(I still am, here, today in 2024. Desperate to cuddle my boy. I miss him. With an agony I don’t know how I’m going to endure).
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/JacZoL3
#nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #teamMikaere #theMikaereFoundation #nkhcansuckit #cure4nkh #nkhResearch from Instagram: https://instagr.am/p/DBLeEFXNOMT/
