Yay, anxiety!

An appointment with our neurologist here in Maine has resulted in a conversation about weaning her off the Trileptal over a six week period. We are all for taking the risk that she may react in a negative manner if that happens. This sucks for many reasons, but could reveal something incredibly important. Our concern lies in both directions.

I was hoping I would come home waxing poetic about hope and the power of positive thinking, but I sat here staring at a blank screen. I am frightened. I want something to happen, but I lie awake every night wondering if I will wake up and have her be gone from us. We don't know if this is progressive. We don't know whether or not we'll wake and have her be unresponsive. Something has to change, but I worry that it won't be for the better. There is so little known that it is impossible to prepare yourself for the next step.

The weaning has started today. Tensions are high.  I am having a harder time writing about it than I thought.  Between the last paragraph and this one there has been two days. I had to work today,  but Patrick stayed home with them and said they were well-behaved.  Cady has more energy than last week. Perhaps the combination of the two meds was making her irritable and overtired. Her helpful, silly nature has returned and I hope it stays. We have all had some seriously emotional conversations about how we all need to work hard to communicate over the next several weeks. She is a very self-aware child and we encourage her to advocate for herself. We ask that if she feels strange or has pain, she speaks up and isn't afraid to admit she needs help. She told me that she can sometimes feel an episode coming on and other times it just hits her out of nowhere. 

The neurologist has asked us to keep a sort of journal "on the last 6 months and what they have been like in terms of frequency and severity. This is how we will figure out if there is a difference being on or off the Trileptal." I didn't mention the blog, but I will someday soon. 

Its hard to document something that is so close to my heart. I want it to be articulate and poignant, but I have honestly had some serious mental blocks just to cope with this.  We need warmer weather and most of all to be outdoors. Not only does it boost our moods, but there is something about bare feet in the grass and sun in your face that just makes everything seem better.

I need to go to bed, so unfortunately I must cut this entry short for today. Thanks for tuning in!