Monthly Archives: November 2014

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?!

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Colbey Raye then

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Adding on!

A moment to myself… Amazingly, Austyn Jayne, Colbey Raye and our sweetest new addition Beauden Lee, are all napping! I have to say that is an accomplishment for a new mommy of 3! I am taking advantage of this moment and am determined to finish this blog post! I’ve started over a handful of post since October and have yet to finish one… Now time is passing and there’s a lot to be said, but a lot will be left out. So to start:

First, let me introduce our most recent addition! Little Beauden Lee Thomas joined our family on Wednesday the 5th, at 4:29 am. A whopping 9pounds, and as sweet as ever.

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We could not be happier, and we are so excited to add this little boy to the family. He is an angel baby, with a sweet, mellow yellow personality! Just a week and a half old he has stollen all of our hearts! Well, we are still working on Austyn Jaynes 😋, but Colbey Raye has accepted him with a huge one armed hug, and bunches of kisses every single day.

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IMG_1583.JPG I have a serious feeling these two will be the best of friends one day. Austyn Jayne likes him, and asks to hold him sometimes, but Colbey Raye will always be her baby, and she still refers to Colbey Raye as the baby 😊. Austyn Jayne loves Colbey Raye! And Colbey Raye adores Beaden Lee

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Now, some updates on the little miss we all love so much! Even though Colbey Raye adores her baby brother, she’s still acting out a little as any 19 month old would when someone (as lovable as he is) swoops in and takes the role of baby, bumping miss Raye to the “middle” child slot! Colbey has been yelling at us and hitting lately. Mostly out of frustration that she isn’t getting what she wants or because she cannot figure out how to communicate what it is she wants. But other than that she is adjusting really well and is continuing to learn. In the last week she has added a few words to her vocabulary!! Woohoo 😄. Along with all the other words she has been saying she now also says; more, Beau, nice, nana (wubunub), baba and will try to repeat little words we say. Her go to word for everything she can’t say is “na” or “nana,” I’m not sure what it stands for but she sure knows! And gets very frustrated when I can’t figure it out. Back in October Colbey Raye has her post op Neuro Psych evaluation, and her numbers were lower than I was expecting. Based on the results she has averaged out to be at an 8 month olds level. Some areas are higher and others lower, but most fall in the 7-8 month range. Her best score was in expressive communication (12month level) and I have to agree! She has improved dramatically in her ability to communicate with us, and even though her receptive communicating skills are a lot lower, she is still improving every day and I feel she’s improved a lot in just the past month at understanding us. I’m trying not to hold Colbey Raye to the standards of this test. I know this is a general test and numbers to not limit the potential and determination Colbey Raye has to exceed these numbers! She is learning, growing and impressing us all so much! Her spunk, and determination to do it herself is such a blessing as it will push her to achieve her goals! She may do things a little different, she might find another way to move around than the typical child, and she might choose to only use her left hand forever, but she is perfect the way God has made her and with the determined personality she has I know she will never put limitations on herself! And we won’t put limitations on her either. Her PT is concerned with her lack of ability to mover her right ankle, so a brace is probably in the near future. Also her OT has questions about her lack of desire to move/use her right arm. While lying on her back Colbey Raye will move her arm more, but when sitting or standing (still only standing with help and support) she won’t lift or hardly move her right arm. So we will be using a wight bearing brace to try and help with awareness. Working, working, working to bring more awareness to that right side! Time is our friend, she will get there soon 😊.

When I would be out and about alone and people would ask me during my pregnancy if I was expecting my first, I always got a surprised look when I said no, this is my third! Maybe I look young, or maybe I am young!! 😋. But they generally always said congratulations and would happily smile. When I would be out with either both girls or even just Colbey Raye people would ask when I was due. After telling them, then next question usually always was how old is Colbey? they would always look at me in shock when I would say she’s 18 months. Side note, unless Colbey Raye is in the shopping cart, I carry her every where. So people would then ask, can she walk? When I reply oh not yet. The looks were astounding… Like I must be crazy for having another when my toddler doesn’t even walk. I hate having to explain Colbey Raye away, but people just don’t know how to respond appropriately to these situations. So I’d explain, briefly saying that she has a seizure disorder and has had a few brain surgeries, no she can’t walk now but she will! Most people will nod, half smile and say something along the lines of “you are going to have your hands full.” I would just smile back and walk on. People have a hard time understanding these situations, especially when the person/child visually looks “normal”! Are my hands full? Oh yes! But they are full of hugs and loves from 3 perfectly created children! Busy, a lot of lifting, careful planning and figuring out how to get both non walking kids in and out of the car along with a contrary 3 year old may fill my hands too, but the rewards are abundant and there is nothing I’d rather do than be a mother, and no matter how “full” my hands are my heart is even more full! ❤

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