Well, figured I should show my blog some attention, since July was my last post. We are finally into fall weather here, and that is a huge thing for us. Olivia can finally move freely about indoors and out---her preference being outside, of course. She tolerated the absurd heat of this summer far better than I could have imagined she would. Her seizure activity overall has been decreasing, or perhaps it's better to say it has been stabilizing. She has been the same happy girl as always, enjoying every drop of life. Her beautiful spirit is one of the greatest gifts I have ever been given. It continues to inspire me to keep trying to be the best person I can be.

But right now, I would like to tell you the results from her recent 48-hour, in-home video EEG. First off, let me say how much better it was to do a continual test like this in our home as opposed to in a hospital. It is a hard test to do, but at least she was in her comfortable, familiar environment with many of her usual activities to keep her occupied. I suppose it's because she is getting older, but she was so much more cooperative and tolerant of wearing all the electrodes glued to her head this time than the last time (which was done last summer, over a year ago). So, the main objective of a test like this is for the parent/caregiver to continually observe the patient and keep an extensive log of all known or suspected seizure activity. The electrodes are hooked to a box that has a button to push at or near the onset of any SZ activity. She wears a little backpack that holds this box.

I don't even know how many pages long our log was this time. I believe it was around 8. Even though that makes more work for the doctor as each event must be analyzed, the docs far prefer "too many" button pushes than too few. I learned the hard lesson last summer that too few button pushes leave too many unanswered questions. So we button pushed like crazy! :) And, our doctor was very glad. Olivia had quite a few seizures during the test (all very brief absence type), and the doctor estimated that Olivia has at least 25 a day. While that sounds like a lot, for her condition it is actually quite good. The fact that she is able to continue developing pretty much normally in spite of these seizures is a key point. It let's us know that we need to just keep doing what we are doing.

Olivia also recently had a follow-up sleep study, and it came back completely normal! No seizure activity was detected and no true apnea episodes. Her previous study (before her tonsils were removed) showed mild to moderate apnea, so we are very pleased with this normal study!

About a month ago, Olivia had a status seizure while we were at the zoo. It landed her in the PICU overnight, and they did have to intubate her. She has recovered very well, and I am so thankful for that. Those kinds of events are ALWAYS very traumatic, no matter how many times we go thru it.

I will try to update again soon! Just wanted to get everyone caught up on some of the recent happenings since my last post.

Love to you all!