And just like that, after such a good spell, the seizures are back. They look different, having changed their MO, and I didn’t identify them as seizures, but the more they happened, the more sure I became.
I’ve just faced the fifth seizure of the day, and I’m heartbroken. More than heartbroken, that word doesn’t even begin to convey my despair, my fear, that sinking feeling you get when you suspect your world is tipping over sideways again. Do the next few days mark the beginning of another stint in intensive care, in hospice? We’ve only been home eleven days.
We suspect it’s because Kai is not tolerating the phenobarbitone. He vomits consistently after each dose. Doesn’t matter whether he’s on gaviscon, before the feed, after the feed, diluted. I hate pumping his little body full of drugs, I hate when he vomits, he gets so upset, and holding your baby while he screams is horrid. I always want to cry along with him, it’s so unfair. So horrific.
It’s in such contrast with happy Kai. Sometimes, after a feed with no meds I’ll get a glimpse of what it could have been like. With a clean nappy, a full belly post burp, he’s positively delightful. He smiles, and coos and makes eye contact. He lights up my whole world. He’s happy, and will interact with us.
I love that little version of him, and I’m constantly striving to keep him in his happy place, but it’s so fleeting. We give him so many horrid meds. He vomits so frequently. And now the seizures are back.
I just feel battleworn. We’re only four and a half months in, and I’m battleworn. The only way I get through today is by hoping tomorrow will be better. That tomorrow there will be less seizures and more smiles.
Please, if there is ever going to be an end to this, it’s in a cure. A proper, honest to goodness conditional gene therapy cure.
I know I’ve asked a kajillion times, but on a day like to day where it’s so clear that every moment we have is precious, that every day could turn, I’m going to ask again:
Please donate towards research. Please.
If not via donation, please fundraise.
Just, please help us fund a future for our son.