On this day, 29.10.2016. So many good things happened today. Kai smiled for the first time, at 18 days old. In his sleep, so not even close to a true social smile (and it would even be too early for a neurotypical social smile) BUT it was a relief to know he could, knowing that many NKH kiddos don’t meet that milestone. Kai also cried – big loud cries which were SO WONDERFUL to hear (because ITU is silent…really sick babies don’t cry). He also got his cannula removed, meaning he only had the NG and the sats monitor (which felt like nothing compared the tubes of previous days), and was downgraded from ITU to SCUBU. Oh the joy to be OUT of ITU! So many cuddles happened today, a proper little snuggler – I don’t think he spent a single minute in his incubator while we were there.
Kai always loved cuddles. Oh, I miss him so terribly. I hate that its been MONTHS since I last cuddled him (how how how how…) and that I will never again cuddle him in my lifetime feels impossible. How is that even a thing? Learning how to love him without him involves some kind of trickery which I can’t get my head or heart around. Every day. Every day I miss him, and I feel the space and the loss. Knowing that this is forever is genuinely devastating.
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