Faith: AUGUST 2011 FOLLOW-UP / EEG TEST

Alannah is 7 months post-surgery now. On August 10, 2011, she had a 24 hour video EEG at Children's Hospital. For those of you that don't already know, an EEG is a test where they glue electrodes to your head in specific areas. These electrodes then record the electrical activity in your brain. This test is used to determine if there is any seizure activity happening, and if so, where and how much is happening.

We arrived on Wednesday at 9:00am and they admitted her for the test. Then she was brought up to her room on the EEG-Epilepsy unit at Children's. They then glued all the electrodes to her head, which she hated because the glue stinks. [pics to follow at the bottom] She made sure they were aware that she was unhappy about the smell! Then they "plugged her in" to the monitor, and that's it! She was pretty much tethered to the bed for 24 hours, but she could walk around the bed a little. She watched movies, played games, and colored with the nurses, me and Eric. We stayed until Thursday morning, when they took all the electrodes off, and then we came home.

The neurologist was suppose to read the EEG results on Thursday and call us with the news, but she unexpectedly had to go out of town for the weekend, starting Thursday!! So, we had to wait until Monday for her to read the test and give us the results.....it was a very nerve-racking 4 days....to say the least. But we love and trust her doctor implicitly and didn't want anyone else to read the test results, so it was worth the wait.

Her doctors' nurse called us late in the day Monday to deliver the good news!! The test showed no seizure activity at all!!! They didn't see any abnormal electrical activity!!! Needless to say, I cried many, many tears of joy....we are so happy and so grateful to so many people. First and foremost, God. Not just for the excellent test result, but for getting her and us through the last very hard 17 months. And then we are so thankful to her neurologist, and the neurosurgeon and all the nurses and staff at Children's for essentially saving our daughter's life ( and putting up with me and my ten thousand questions!!) . We can never repay them for that most precious gift. And also thanks to all of our family and friends who provided never ending support and love through the whole process.

It's not quite over yet,though. She has to continue taking the anti-seizure meds for a full year post-op, which means through Jan-Feb 2012. It is their protocol to keep them on the meds for that long, because the brain can "re-learn" the seizure activity. Research has shown that it is less likely for the brain to re-learn the old seizure activity if they keep them on meds for 1 full year. We are of course praying that this "re-learning" does not happen!! But only time will tell. In Jan-Feb, she will have another EEG to confirm these test results, and also she will have another visit with the neurologist and neurosurgeon. Then they will decide when to start weaning her off her meds, if that is possible.

This whole process has taught us a alot about ourselves and about epilepsy and how much it can limit someone's life. We have decided to try and help other people with epilepsy by raising funds for The Epilepsy Foundation. The Epilepsy Foundation uses their money to fund research for surgical procedures, like the one Alannah had, and also to fund research for new and better meds for epilepsy control. They also create and help to pass laws which are aimed at preventing discrimination against people with epilepsy in the workplace and in schools. This is a link to their website and description of their foundation: http://www.epilepsyfoundation.org/aboutus/

Bella already started by working a lemonade stand all summer, and was able to raise $ 504.08. God-willing, in March 2012, Eric and the girls and I are going to Washington DC to participate in The Walk for Epilepsy. We are planning to investigate how the whole "WALK" works, and then hope to start a team, in Alannah's honor, for coming years. We hope that some or all of you will be willing to stand and/or "walk" with us for Alannah and for all the other children and adults who have dealt with, or are continuing to deal with epilepsy and its effects.

The Epilepsy Foundation's motto is "Not another moment lost to seizures". We sincerely hope that one day, this motto could be true for all people who have been diagnosed with epilepsy.