Wednesday, September 5, 2012

When I was pregnant I used to sit in Kinley's room and imagine what she would be good at when she was older. Would she do gymnastics, dance, cheerleading, be a singer, play an instrument, basketball, volleyball? I would find myself actually giving real thought to this question and stress a bit over what she might choose. Today my thoughts are drastically different. All I dream of for my baby girl is seizure freedom. I don't worry at all about the rest. Kinley is the most determined child I have ever met, and she will figure out a way to achieve any goal she sets for herself. But we have to get her to seizure freedom first.

So that's the goal. October 2 she will undergo what we call a hemispherectomy revision surgery, aka a "redo". After the surgery panel met, they decided there was too much ground to cover with a laser and elected for the good, old-fashioned method - they will crack her skull and separate the remaining connections in her right brain. We were stressing over whether to attempt the laser method and prayed for God to help us make the decision. And that's what he did - even though it is a bit disappointing at the same time. We just knew it sounded too good to be true.

And I'm trying. I really am trying. Not sure what exactly I am trying, but I know I am trying for something. I think most of all I am trying to keep a positive attitude. I know this surgery has a 50/50 chance of working or not. We know just as many kids that have had two surgeries as three surgeries. And unfortunately, many of them still have seizures after that. But there are plenty of kiddos that are living a seizure free life. And we will choose to focus on those lucky few. I am trying to convince myself that this surgery is the answer. She is older and her brain is more developed. Dr. Curry is very certain that he can do this and get it all. So we put our faith in Dr. Curry because, well, because we have to. And I'm trying to believe that the second time is the charm because, well, because we have to. And most of all, I am trying to convince myself that the surgery will not have a negative impact on her development. And this is the most trying trial of all. I know that there are a million things that have to go right. And a million tiny opportunities for something to go wrong. And the chance that the part of her brain that is still connected is being used. If this is the case, it will result in a loss of whatever the skill is that is mapped to that location. We don't think this is the case, but you just don't know.

We have just been so blessed, in spite of the seizures, with her recovery. She is a role model to hemi kids all over the world. I get so many messages from the other parents that look to Kinley to see that its possible. Its possible walk, talk, run, count, sing and play on half your brain. And its possible to do it while laughing, smiling, hugging, kissing and high-fiving everyone around you. 

I just want to reassure Team Kinley that she is doing great! She is totally oblivious about what is going on. She started singing her ABCs all the way through this weekend (even though there is definitely progress to be made), still loves her burritos and is really enjoying playing in her kitchen....oh, and watching videos of herself. She LOVES Kinley :) Well, Kinley and Taylor Swift...oh, and this terrible video I found on You Tube one night of The Cat Came Back. Mental note, next time she asks for a song about something, I need to think about modern music and not some goofy song I sung in 3rd grade choir. Because when you find goofy songs from 3rd grade on You Tube, your daughter gets addicted and then you end up with The Cat Came Back in your head for days on end and your daughter walking around meowing. Not good.

video




Oh, and we did start her on a second med, Keppra, tonight, in hopes of eliminating the seizures before surgery. So here's to hoping. And faith. And trying. We did it once before and we will do it again. Deep breaths for mom...and all of Team Kinley. 

Thank you for all the prayers and positive thoughts and messages to us. We appreciate everything yall do to show us support.