When we grow up, we make decisions.

Isn't it funny how when we are in middle school and high school all we want to do is grow up. Now that Im grown up, sometimes it would be nice to be a kid again. Have your biggest worry be what to wear the next day, or what place you may take at your track meet. I have never been good at making decisions. I always look for a sign. Sometimes it's there. Other times you don't get a sign and you use your best judgement and pray you made the right decision. Before talking about todays appts we had for Zoies seizures ill explain something. Zoie has epilepsy . She has epilepsy because her brain is built differently than ours. She has a smaller brain than we do. Sometimes her seizures are under control. Sometimes she has one a month . Other times she has them off and on for 24 hours straight. That's when my sweet friends know I need a coffee because Im stuck in my jammies and cant leave the house. It could always be worse, and luckily, Zoies are almost always under control. The thing is though is that they are controlled with the three (not good for you) meds she is on both morning and night. These meds slow breathing, change her, are bad for her teeth, her immunity, and can up the rate or death. Our goal as parents is to not have her on so many meds for her seizures. We also know that she will always have seizures, but we would like one every few months. They aren't good for her either and can mess with her quality of life. With all of that said, we have been looking at other options to help control seizures. Our other option right now is a VNS implant. We met today with a doctor who specializes in these and also with a neurosurgeon who does the VNS surgeries at Childrens hospital. Its like a pacemaker , but it goes on the left side of the chest under the skin. It has a cord that goes up the neck also inside of the skin and then attaches to the bottom of the brain stem. How this works is it it set to go off every 5 minutes for 20 seconds or so. It resets the brain wave patterns and has a 50% chance of helping seizures. Not stopping them. It may shorten them, decrease how often they are happening, or shorten the recovery time after a seizure. It's a complicated thing ;-) After meeting with doctors who know Zoie we are leaning towards surgery. Our hope is that it would help her seizures and in a year we could take away a med or two . The surgery and device aren't scary for normal people. But we have learned Zoie isn't normal. With her Cystic Fibrosis it makes anesthesia a bit more worry some along with how tiny she is. The surgeon told us Zoie would be the smallest patient he has done it on, but he is confident all will be okay. I asked Derik.... "why does Zoie always have to be the first for everything?" We could wait a few months to do it. But a pound isn't going to matter and then we would have another kiddo to worry about. We could wait a year or two. But Zoie doesn't have a year or two to wait. We want the best quality of life for her, and it may hurt her Komore if we do wait that long. Choices. Choices. Choices. We don't have to decide tonight... Or even tomorrow.... But unless God shows us a " no" sign, we plan to call and get it on the docket next week. This would put her surgery out about 2-4 weeks. I cried a lot today. Im pregnant, and we love that little girl more than anything, and I just always feel so bad she has to go through so much. Im like, "God... Put me through something. Not Zoie." but it's not my choice. We don't want to do the surgery, but this is where you set selfishness aside and look up on your faith and do what's best for Zoie. We don't want to leave her for the 4 hours. Or have her be put under. Or have her in recovery. Or stay at the hospital. But... I know if we can get through that, we will be better off and thankful we did it. There is the possibility of an infection at the site, so thats what we as parents would watch very closely for two months. With all of that said (and Im sorry if that's a lot of info it is for us too) we need prayers that we make the right decision, and that it will work and help Zoie, and that we can stay calm the next few weeks up until that day, if thats what God leads us to do. <3 Again, stinking choices! When we do make that 100% go ahead and schedule surgery phone call we will let everyone know so you all know when to pray extra hard for a good and healthy surgery <3 Thanks for everyones support always with our little Z. We honestly couldn't do it alone <3