One year ago…

One year ago… Has it already been one year? One year ago I spent 5 days at Seattle children’s Hospital with Colbey Raye searching for answers. As clear as day, I remember this visit, as I do most all the rest of them. The events that took place, the specific doctors on rounds, the MRI results and the information that was found, the information that would soon change Colbey Raye’s future. We were trying medications, the neurologists wanted to try experimental medications, and I was not comfortable with that. They suggested the ketogenic diet, but I knew that wasn’t the answer. But what was? Colbey Raye was hooked up to a VEEG, one that was supposed to run for 24 hours, but after catching 7 seizures in just the first hour it was cut short, and a PET scan and MRI were ordered. I will never forget the moment the attending neurologist revealed those results. If any of you have worked with neurologists you will know that they are wonderful, talented and very intelligent people! But some times they can be very monotone in their emotions, and theirs explanations of things may feel like they are reading it from a scripts. So, on the computer screen are two images of Colbey Rayes brain, one from the PET and the other from the MRI. The explanation went something along these lines, so you see, when the images are placed on top of one another you can see their information correlates, and the affected areas (up until this point I was only aware there was one small spot on the parietal lobe) are greatest in these 3 (wait, 3? What happened to just one, one small spot?). Pause, my mind is a little confused. Yes, we had these tests run to see what was going on, but can I have an explanation about what 3 areas mean? This is all going through my head as I try very hard to soak up all this information and put the pieces together. Finally, feeling a bit like a child in school raising their hand to ask the teacher a question I say wait. And I ask for the explanation, what do you mean by areas plural? The original spot that was seen on Colbey Rayes very first MRI was not the only area of her brain that was affected by Cortical Dysplasia, according to this most recent MRI. Now she was 7 months old, her brain was bigger and it was easier to capture these abnormalities on the MRI. Okay, so now that I’ve learned there are areas on her frontal, parietal, and temporal lobes my next question is, what does that mean for Colbey Raye? This moment, this event in time, I won’t forget. The attending states that with this new found information they will be presenting Colbey Raye’s case to the neurosurgery team to see if she is a candidate for surgery. Emotions were flying! Good ones, sad ones, scared ones you name it, I felt it! My baby, my little, happy, suffering, sweet, seizing baby may be a candidate for a miracle.

I can’t go back and gather my thoughts, I can’t look back and feel everything I felt that week in the hospital, but I can say it was one of the hardest times of my life and I will never forget that. For many many different reasons, that week holds a lot of emotions, some I’ve shared and some I won’t. Being faced with the thought of my child receiving brain surgery to remove parts of her brain is unthinkable, but I had to think about it. I had to think about it a lot, every day, until it was decided. And once it was decided upon, scheduled and followed through with I still had to think about it. And I still think about it every day. Not a day passes that I don’t think about brain surgery. It is still an emotional thought. No longer is it emotional in a way that worries me, or keeps me up at night, but in a way far greater! How amazingly blessed my little girl is to have been granted such an amazing miracle. I get to witness a miracle grow every day. That sweet face, that shiny scar, my constant little reminder that no matter the struggle, no matter the strife, there is not just a light at the end of the tunnel but a life! A life full of miracles, and we get to live it. Tomorrow marks 6 months since Colbey Raye’s hemispherectomy, and in just 10 days she will be 6 months seizure free! Amazing isn’t it?!


Colbey Raye then


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