It is so hard for me to keep up with this blog...emotionally and physically. We are still in limbo regarding IVIG treatments as we have to meet with a neurologist at the Epilepsy Center at Children's Hospital as our regular neuro is not familiar with IVIG treatment. Of course, nothing is ever easy. It took 3 phone calls to the Epilepsy Center and a phone call to our regular neuro before we finally got an appointment. When the receptionist at the Epilepsy Center finally called us back with an appointment, the earliest appointment they could give us was April 21st. So then I had to call our regular neuro again since he said they should be getting us in within the next couple of weeks NOT in a couple of months. I am still waiting to hear back from our regular neuro. Of course, nobody is in a rush to get things done because it's not THEIR CHILD HAVING DAILY SEIZURES!!! Can you tell I am frustrated??? I am just so tired. Tired of always being Sophie's advocate. Tired of fighting. Tired of researching new treatment options. Tired of watching Sophie having seizures everyday. Tired of all the therapy sessions. Tired of not living a normal life. Tired of wondering what Sophie's future will be like. Tired of working with Sophie everyday to get her to do things that she should have been doing a year ago. Tired of feeling guilty. But Sophie keeps me going. That precious smile of hers. She is just so incredibly adorable. I love her so much.

Why I haven't posted...

I have not posted in the last month because on January 7, 2008, Sophie started having seizures again. She has been having seizures every day since then. We have tried increasing her Depakote with no success. I am sorry to all of those who I have not been honest with in the last month. I did not want to admit to myself or to anyone else that her seizures returned. By saying it out loud it made it more real. I was in denial. I thought with an increase in medication that they would go away again and I could forget that they ever returned. Unfortunately, they have not gone away and I can no longer pretend that they did not come back.

Things have been crazy this last month between Sophie's seizures and getting ready for the new baby. Elsa Kate was born on January 22nd and is a healthy baby girl...weighing in at 8 pounds 6 ounces and is 21 inches long.

We are currently researching IVIG treatment for Sophie's next treatment option. If anyone has any experience with IVIG, please let me know.