Calm Amongst the Chaos

Lily continues to fuss for us, it is typically around 4-6pm. She has lots of myoclonics and atonic drops during that time and then she has a larger tonic clonic, then more fussing then she relaxes. I try to stop it with a small dose of klonopin but that rarely helps. I don’t know what her deal is and why it is happening like it is. She is also refusing to eat much and she is really struggling with going potty. She constantly needs help with medication and it is so frustrating that her body won’t just do what it is supposed to do. I am making her go daily to try to prevent her from getting tummy aches, but you just never know what is going on with her. She’s just not herself lately. She is really fussy right now as I write and it is 2pm on a Sunday afternoon. Not sure what she wants or needs and really wish I knew. She loves going outside but it’s been raining all day so maybe being cooped up is bugging her? Who knows?
Andrew went up on a snowboarding trip with his friends this weekend and it is a lot of work to have all three alone without much help. I did use our nurse on Saturday because I had already made plans a month prior and didn’t think I was taking any kids with me so at least having someone for her made things a little easier. So anyway, that trip is his birthday gift. And I am so working on a girls trip and soon I hope! It is hard though since Oliver is still nursing and still not sleeping through the night. Sigh. I need to toughen up on him… but he’s my last. He’s my baby.
Well there are so many things that need to be done. I better get to it. Just wanted to check in, I know it had been awhile.