On seeing the deterioration

By 5th May 2017 No Comments

This last speight of seizures have done something to Kai’s brain. While Kai was in intensive care over Christmas a neurologist said seizures less than 5 minutes don’t do any harm. I’m not sure I believe that based on the changes in Kai. It’s so demoralising watching Kai become more and more, for lack of better word, disabled.

Way back in December, when Kai was not even two months old I thought the doctors were wrong. Kai behaved like a baby, you’d never know he had a disorder by looking at him. Clearly he was just fine and didn’t really have NKH (spoiler: not fine). Then after our epic stay in intensive care/hospice over Christmas I thought they’d got the severe diagnosis wrong, as he clearly looked mild. (Spoiler: not mild).

After this last round of seizures, it’s hard to deny. Kai’s stopped making eye contact. He almost always looks top left now. If he looks elsewhere his eyes don’t always look in the same direction. And he’s stopped using his arms unless he’s incredibly agitated. I know it’s not the seizures causing the changes per say, that it’s NKH underneath causing the seizures and the brain damage.

It’s just so heartbreaking. I know that I use that word a lot, but I feel like we’re being hit with one thing after another.

Nonketotic Hyperglycinemia. What a bitch.

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