1. Kai started holding our fingers. If you put your finger in his palm he would HOLD ON. This grasp reflex meant that his reflexes were returning (!!) which considering where he was a few days ago (no reflexes, unconscious coma, imminently dying) this felt absolutely huge. Plus, it was nice to feel that connection, that he wanted to hold on to us just as much as we wanted to hold on to him. He was beginning to move a little more, wriggle a bit. It was hard to tell if it was intentional movement or seizure related, which is why the grasp reflex returning felt like such a definitive moment.
2. Kai opened his eyes. He OPENED HIS EYES. He was 15 days old. Considering the last time we saw his open eyes was at birth, we were ecstatic. This was one of the first milestones that showed, beyond a doubt, that he was moving away from imminently dying.
Oh my beautiful boy, I wish I could see your baby blues now. I wish you were here to laugh at us, to laugh at your sister and to be here, with us and your nurses and just. Here. I wish you were still here and I miss you. So very much. I can’t describe how very much, there are no words, really. Another day without you (another day carrying you in my heart).
#nonketoticHyperglycinemia #glycineencephalopathy #raredisease #nkh #ifhnkh #metabolicDisorder #inheritedMetabolicDisorder #cureNeeded #complexmedicalneeds #nkhawareness #nkhcansuckit from Instagram: https://instagr.am/p/DBlOAdCMnHb/
