On still waiting for the corner to turn

By 20th November 2017 January 25th, 2018 No Comments

This past week has been tough. I’m going cabin crazy, but couldn’t possibly leave. I’m sleep deprived, on edge and the whole house is emotional right now.

Kai is still sick. The 3-5 days thing was bs. We’re doing NKH bronchiolitis- the kind that’s never ending, the dig deep marathon kind of ill. I’m over the fever spikes and mucus vomits and the suctioning. We even had to start oxygen yesterday, for a bit when Kai couldn’t manage to hold his own o2 levels.

Also, Kai is having crazy seizures. We’ve gone from 10-25 seconds to a minute and a half seizures. What was maybe two or three a day last week is now twelve a day, minimum.

And they’re violent. Kai is now very aware of them and will cry in the middle before he’s swept along with the shaking and jerking and tense horrid all of it. It stops when his brain can’t handle anymore and it konks out.

And as I’m holding his little body and crooning to him I’m crying too. Watching him suffer is tough. Everything comes second right now. I haven’t showered and my flat is a bombsite and breakfast happened way past lunch time… I’m too focused on Kai. Too consumed by his pain to do anything more than be right next time him.

I spend my down time googling more epilepsy research. More about seizures and what else can we do? We already listen to Mozart K448. He’s already on DHA (thanks Omega 3).

Neurofeedback is our next thing. I hope, with a longing I can’t even explain, that it helps his seizures. (Again thank you to everyone who has donated. If you’d like to donate to therapy for Kai you can do so at justgiving.com/crowdfunding/help-for-kai )

But while we’re looking for the next thing that will help Kai, I can’t help but feel we’re fighting symptom fires and not the cause.

I hate NKH, so much. It’s horrid. Come on UCL researchers. We’re cheering you on. You can do it. Make gene therapy work for NKH. Please.

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