Tuesday, July 24, 2012

the seizures are ceasing?

Dear Little Leah, 

The other day, I posted about you and your seizures on our family blog. I hope you don't mind. I did it because I try to post the truthful happenings of our lives and also because I've had a lot of people ask specifics about your seizures - what they look like, how long they last, etc. When we were at the doctor for Kate's checkup, I happened to have my camera out and you happened to start seizing, so I took some pictures. 

Oh Leah, these pictures are so hard for me to look at. They remind me how not in control of your situation I am. They remind me of how much harder you have to work to do so many things. And how downright unfair it is that you have Rett syndrome and can't even tell me what it feels like to have this happen to your little body. 

But, Leah, they also remind me of how amazing you are. The fact that something like this can happen to your body - and you don't have the ability to stop it or control it or communicate it in any way - is horrible. But you often come out of it smiling. You love when you can "kapow!" a seizure. 

Speaking of kapow!-ing seizures, your new medication has been working pretty well! You went three full days with no seizures, then you had one on Sunday morning. Then none yesterday and one this afternoon. Two in six days is so much better than our norm as of last Wednesday. Here's to hoping it continues to work and you can get back to your normal, happy, smiley, rambunctious, giggly self. 

You are the strongest and bravest girl I know. And I know a lot of girls. 

I just love you so much. Keep on kapow!-ing!!


1 comment:

  1. Just checking in on you, brave girl(s) (and boy). You're not writing as often -- what a surprise. I hope that means that you're busy/happy and not busy/overwhelmed. Congratulations on baby Kate, Leah's graduation and another batch of months of dealing with hard stuff.