So What Are You Doing on April 14th?

If you're not busy, you could join us in praying for a successful VNS surgery for Caleigh Faith. We tried our best, our neurologists both tried, but it has come down to this. In a few short weeks Caleigh will have what is actually a very simple and straightforward surgery that we hope will make all the difference in the world to her. Despite trying every medication on the market for her type of epilepsy, plus a few that aren't widely used, the results just never have been long lasting. She has what her neurologists call a "honeymoon" with each drug...but all too quickly the honeymoon ends! There are all kinds of analogies that they use...sort of interesting. She will have the surgery at Texas Children's Hospital in Houston, but they are allowing us to use our "home" neurologist in San Antonio to do the weekly programming that will take place for at least 6 weeks. Thank you Lord. If I had to drive to Houston every week for 6+ weeks...

When Dr. W. first came in today he was talking about how her blood levels were good and that we might be able to play with these two meds a little and put off surgery a bit longer...then he looked at her EEG. I can't describe what it does to me when I see his face as he reads the EEG. This is the second time that I've watched his face fall--today he looked at it and just said, "Nevermind. It's time." She had a ridiculous number of seizures during her 30 min. test today. Ridiculous.

This was not an easy decision and was not taken lightly. Basically, there is still a chance that she could outgrow this disorder. Unfortunately, even Dr. W. (who is known in neurology circles as the smartest man on the planet) can't predict the future. Will she outgrow it? And when? In a year, two, three? That's a long time to a 10 year old girl. And if she doesn't, the odds of her going on to develop grand mal seizures (which won't go away) shoots up considerably. In the meantime, she is struggling in ways that very few of us understand. The energy that it takes for her to compensate, which we all agree she does extremely well, is taking a toll on her. School is not fun anymore, it stresses her--and not just a little bit. Every seemingly ordinary milestone becomes complicated. Summer camp, going places with friends, everything is affected. We are very confident that we made the right decision.

I really am so tired my brain has now shut down. I just decided to write while everything was fresh on my mind. I'll follow up in a day or two with some more information about VNS and how it works. BTW, I thought it was interesting that both of Caleigh's grandfathers asked how she is dealing with this decision. (I know, she has sweet grandpas--and grandmas!) She is handling it very well. She asked the surgeon a couple of questions. Bless her sweet heart, she's worried about her singing voice--because you KNOW she just might be the next tween sensation! He explained that her voice WILL be affected, but that it tends to fade over time. She is also worried about the actual surgery, understandably, but I think we have calmed some of those fears. She told us in the car tonight that she's ready--and that she thinks this is a good thing if it will help her feel good again. We agree.