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What we’re up to… October 28, 2024 at 10:00AM

By 28th October 2024 No Comments

On this day 28.10.2016. Looking back at these photos feels easier, less traumatic. We were still in NICU, but each day brought back a whole bunch of positive firsts. Looking back, I can feel the joy thrumming through my chest, the love and the hope and the ‘thank all the powers that be’.

We tried him on a bottle on this day. It took a minute, but he worked out his suck reflex and took half a bottle safely (honestly, the idea that we did this without a SALT present gives me genuine anxiety right now, but I didn’t know anything back then). Reading back on old posts, I wrote “He’s doing so many more beautiful baby things. We love him so much. Sam laughs when our baby farts. And plays with Mikaere’s face. And our baby cries, with noise. Wrinkling his whole face up to show his rage.”

These were the first few days Kai got to be in his body where it wasn’t shutting down. Where it wasn’t broken, it was just perfectly imperfect. These few days were the first days of more love than pain. (Also, now that he wasn’t attached to tube and just sats wires, you know he spent most of the day in our arms, and not in the incubator). This was our second good day with him. He was 17 days old. I don’t for a second take for granted how lucky we were to have more than one good day with our boy.

#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit �#fundraising #teamMikaere #theMikaereFoundation from Instagram: https://instagr.am/p/DBqedQTNkF2/

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