Heartbreaking

I don't really have any other way to describe it. The past week has been terrible. Cavan is going through something that we aren't really sure what it is. Could have something to do with his brain, could have something to do with him being four. We don't know. About midday all week he has literally snapped. Something sets him off (whether it be him not wanting to eat or him not raising his hand etc) and sends him into a tailspin. He starts by shutting his eyes really tight. Then he begins to wail. It's a repetitive moaning/whining/scream cry. No tears come out. But he can't seem to stop himself. Or doesn't want to? We don't know. He does it for over an hour. Yesterday I had to go get him because he couldn't get on the bus like that. Today was his Valentines Day party. He was awesome all morning and then snap! He did it again. When I arrived he refused to open his eyes. He couldn't walk (which scared the hell out of me) but when asked why he said because his eyes were closed. I tried to take him to the party which was held in the cafeteria. He wouldn't even participate. Hell, he wouldn't even open his eyes. I had Ronan with me who was following every instruction and having a blast. But Cavan was still crying. And I looked around the room and realized.... My kid is different. And it broke my heart. And I felt like if I stayed in that cafeteria one more minute I would suffocate. And I had to get out of there. Because my kid can't play normally and I have no freaking idea why. So we left. And the minute he walked out the door, he was normal. Which leads me to believe that this is behavioral. And I still don't know what to do. But for now- I'll just cry and drink my Venti Mocha. 

Happy when we are leaving...

Thank God for Drive thrus...

This is Big. This is REAL Big.

It started out as this, "hey Kenyon, wouldn't it be cool if we did like a little party for Epilepsy Awareness Day?" His response was a look. I couldn't really tell what he meant with the look that he gave me- it was either are you freaking kidding me? Or go for it! So I chose the latter. 

When I first planned this in my head, it was a party at the house. Everyone wears purple- we make purple Martinis (um, priorities much?), maybe grab a couple of vendors to make some money for CHOP. But then I thought God I hate cleaning my house. So we decided on having out. The more I thought about it, the more I wanted it kid friendly (plus alcohol!). Because who is this really for? All of the kids like Cavan. So we came up with games and activities. We thought about what things kids love when we go to fairs and carnivals etc. and we started booking them. 

 And then things got big. They got really big. Because you know why? We live in a kick ass town and we have kick ass friends. Everyone is chipping in and donating. Everyone is supplying me with ideas and donating time. And I am overwhelmed. In a totally good way of course! But man is this thing going to be fun. We will have vendors, and kids activities. We will have face painters and balloon artists. We will have food! Free food! Drinks are on you, hahaha! That could get pricey! But best of all- we will come together. And be happy. And support something that my Keto kid is trying to beat- hell- at times he's just trying to maintain it. But we will do it together. And we will raise awareness for epilepsy. So that hopefully, in some time, someone can find a cure. Hope to see YOU there!

Well Shit- That Sucks

As many of you know, Cavan had the stomach bug. In the past, seizures would completely take over when he was sick. They would skyrocket in number. So you can imagine my surprise when he didn't have one seizure yesterday. He even puked up his meds yesterday morning. And he was so loving! Every word out of his mouth was 'Mommy, I love you. Mommy, you fill my bucket. Mommy I love maevey.' Etc. I was like damn! This kid should get sick everyday! He went to bed easily and woke up this morning with no problem. 

 His numbers were a little off this morning. I expected that though since he hasn't been eating at all. His ketones were through the roof and his blood sugar was low. But he ate a lot of food this morning- certainly not all of it but enough. I sent him to school happy. 

 Right after feeding Anya and Ronan lunch, his teacher called to tell me that they are pretty sure he had an absence seizure. It took my breath away. Noooooo I wanted to scream! Five months seizure free and this stupid sickness reset that. It sucks. Everything they described sounded like it. It's just so hard when I'm

Not there. Like- maybe it didn't reallllly happen. Not that I don't believe them but I guess I just don't WANT to believe them. Anyway, Kenyon went down there and checked his numbers and evaluated him with the school nurse. He was being his normal crazy Cavan. So we left him there. Let's hope this was a fluke. Let's hope this stupid stomach bug made this happen and we aren't going to go downhill from here. Let's hope I don't get any more phone calls. And tomorrow, we start at day 1 again. I hate Epilepsy.