Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Seizures suck. They really really suck. God, I hate seizures.
We went low on clobazam again, my fault. We get it from Canada and every time I call to order it they will call me back the next day on my house phone, I get the message after they close, call back the next day and then they ship the next day. Still my fault, I know this and really need to call sooner. But my middle name is procrastination.
Anyway she went from 1.5 2x a day to .5 2x a day for 2 days while waiting for it to show. I knew seizures would act up during that, but she’s been back on her regular dose since Monday night and this morning was drop seizure then scream and cry NONSTOP she then got the hiccups then went into a grand mal and then she seemed better. I know weird. It appears the GM stops the drops though. But she was doing great in the beginning of vamping up the VNS, like best she had been in a long time, THEN it seemed like the higher we went the worse she was getting. Is that even possible? I am just so tired of seizures. So so tired.
It is always a great reminder though of what we are raising money for. What we are fighting for. When I think about Lily’s life I think she is a happy little girl and that is what keeps me going, but mornings like this make me wonder how happy can she possibly be? I mean she cried herself into hiccups. She has been grinding her teeth lately and haven’t done that in years. It strikes me as stress. I don’t know if that’s true, but I don’t want to think of her stressed. Ugh. My baby girl.
We meet the new neuro today at 1:45pm. Praying he is wonderful. I had such a great relationship with our last guy, for 7 (!) years, so the bar is set high.
We head out to South Dakota Sunday, the girls will miss school all week but it will be worth it! The run is on Tuesday. Please look at the top of my blog with the pages and click on 2nd annual Lily’s run for more info and how you can buy a raffle ticket for the refurbished Harley my husband has been OBSESSED with for the past 6 months. Watching him give that away might be the saddest and funniest thing to happen this week. He loves this bike.
We have had so many people take part and help out with the bike either financially or physically and we can’t thank you enough. We are thrilled to have this opportunity to fund raise and I can’t tell you how important it is. Kids shouldn’t have to live like this. I want all our efforts to make the future children with CDKL5 to have little or no affects from it. I want our life to serve a purpose and this is it.

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