Some Information--Including the Correct Date!

As I posted on fb, the date for Caleigh's VNS surgery has been changed to May 5th. This would be because her overwhelmed and slightly fatigued mother wasn't thinking last Monday. We scheduled the surgery for two days before her dance recital. Let's just say that she was less than pleased when we made the discovery. She has worked really hard since September learning these dances. Keep in mind, when you are having seizures every two minutes, learning/memorizing two fairly complicated jazz dances is not easy. Have I mentioned the girl is a master at compensating? Also, we have paid for two costumes and two pairs of jazz shoes. And if you haven't priced them lately, we could pay rent on a decent sized house for a month. Okay, not in today's economy, but the things are stinkin' expensive. So I called the surgeon's office--I found the number RIGHT under the statement "PLEASE DO NOT CANCEL YOUR CHILD'S SURGERY FOR ANY REASON ONCE WE HAVE SCHEDULED IT". Yeah, I know...although I wondered why they gave me the number if they didn't expect a call. She didn't yell at me or anything and we are on the list for 5/5/11. What a Cinco de Mayo celebration!


I know a lot of people have never heard of VNS and some would like to know more. So, I borrowed a picture and I'll use my own "Mom Speak" to try to tell you a little bit. Basically, VNS is a sort of pacemaker for the brain. This is NOT brain surgery, however. The vagus nerve conveniently passes by the carotid artery in the neck on it's path through the body. She will have an incision in her neck where the leads will be wrapped around the nerve, and one in her chest where the generator is placed. Her surgeon is actually "dance costume/prom dress/wedding dress" savvy and said for girls he likes to make the chest incision under the arm. Nice, huh? About a week after surgery the stimulator will be turned on and then for six weeks or so we will be beating a path to SA to visit with our neurologist there for programming. The stimulator will be set to do its thing every 30 seconds to 5 minutes, depending on her response. The vagus nerve acts as sort of a "natural electrode" and stimulates her brain to straighten up and is supposed to reduce the number of seizures. She will also have a magnet that she/us/school nurse etc. can use to "jumpstart" things if needed. It looks like a watch--it is worn on the wrist and is swiped across her generator in the chest as needed for an extra boost. The surgery is 1-2 hours long and requires general anesthesia. She will still be on her seizure meds indefinitely. Boo. I know. But it takes a while to see how she will do with VNS. She will be released from the hospital same day if all goes well, though because of past anesthesia stuff (she painted the inside of my car pink after her tonsillectomy), we will be staying in Houston that night. The surgeon thought it best that we stay in the area anyway since we don't live close by. You can read as much as you want by searching VNS. If you were so inclined, you would see quickly why I am limiting what I read. There is always something. I researched this quite a bit last summer, and we feel confident in the decision as I said before. But you can scare yourself silly. I'd rather pray without ceasing. So that's it! Thanks for reading--I am open to any questions. I've probably heard them before, but I don't mind.

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.