I just...

Okay. This is ridiculous. 

We sent the kids off to their grandparents "up North" this weekend. They had a blast! They got rides on the four wheeler, played in the snow, baked cookies, and got to see some extended family. After a bad week, they needed something normal for a while. 

On the car ride home, Cady seemed off. She kept wringing her hands and getting wiggly. I asked if she was alright and she said she was fine. After a few hours home, we were just watching TV and she says, "Mommy? I feel like maybe the Thing is happening in my hands a little bit." My heart drops and all the anxiety is bubbling to the top again. We call it a SadMad. I stay calm and we all crack jokes. We gave her some Diazepam and let her watch some Youtube videos. We gave her the rest of the cocktail too. Tylenol, Oxcarbazepine, Acetazolemide (that's the new one) and the Amoxcillin. She told me that the Amoxcillin tastes like barf. We know. It always has, and it always will. I know it's only been a week or so, but the Acetazolemide makes her... bitchy. Theres no other word for it. It's a mean thing to say about a six year old, but it makes her whiny and mean. I can't get her to do anything without arguing about it. 

We have a doc appointment Tuesday to speak with the neurologist here at Maine Med. We don't know what to do. Luckily, they have been on February vacation all week to try and re-adjust to "normal". Whatever the hell that is. We'll see if she feels well enough to go to school tomorrow. She's always so worried that it will happen at school. It consumes her. All we can do is validate her feelings and try to move past it.

She's becoming more and more aware that she is very different from other kids. I try to remind her that other than her KCNQ2, she IS just like other kids. Her sister takes care of her too. She puts on a show and tries to make Cady laugh with weird voices, funny songs, and outrageous dancing. 

We're a good team. We try anyway. Our lives are full of love and laughs right alongside the pain and fear. 

I can't say anymore. See you soon.