Journal entry by Barbara Bradley — Sep 30, 2014

I’ve been up since 3 am so if I write something loopy then you will know why. I am getting to the point where I never want to celebrate the good or say anything is “fine”. I guess I need to accept that it just isn’t going to be. I will just cut to the chase because I am exhausted, frustrated and in no mood. We literally just drove up to Duke on September 5th for an EEG. A week later, we get results back and they are clear.

I took her back to the GI because we felt we could then conclude her issues must be GI related and not brain.  Now, in the past few days I have woken up around 6:30am to Katie screaming bloody murder like someone is in her room. I was praying it was perhaps her stomach or just a good old fashioned nightmare…until last night.

I have been up since 3am with Katie screaming in terror every 30 minutes until I finally just made her get up around 7. I had wanted to let her sleep in but not if that is the alternative. I can only assume these are seizures but I am starting to feel like the kid who cried wolf. However, this is the same child that went 2 years seizure free, started having enough seizures to land her in the hospital 2 days later and then had a second brain surgery 2 months after that……so, hell, we are due again, right? I don’t even know what to say. I have a call in to her neurologist. If I don’t hear from the nurse in a couple hours I will can back. I must have some sort of direction to go before the night comes. I am terrified of going through that again. It is bad enough feeling on high alert like you have one eye open but it’s worse to wake up to a scream like that over and over again.

Please pray for answers.