August 16, 2012
So I'm thinking as I begin to write this that I should really take some lessons and learn to do a blog :) But since I don't know how to do that, I'll continue to update everyone on here until I have some free time to figure out blogging!
So today, we spent another day at Duke. Kai's team of genetics specialists called us 2 weeks ago after conversing with specialists around the country at Baylor, Charlotte Childrens Center, Duke, UNC, and a few other research labs I don't remember the name of...they decided that pretty much our only option for having any hope of having answers for what's affecting Kai so much is to put him through a test called a Human Exome Sequencing. The way they explain this test, is like it's looking at a library of books, but only seeing the words with no capitals, punctuation, etc. It will look at the genetics of both Kevin and my genetic makeup and compares it with Kai's to see if there's any genetic abnormalities anywhere in any of us that could possibly be causing his symptoms. This test looks at Kai's dna and if any abnormalities in the genes of his, they will compare it with ours. The other tests we have had done have had about a 20% chance of showing an answer. So far, NONE of them have showed anything at all. Zero. Nada. This test has about a 50% chance of showing us some answers, so we are cautiously hopeful. God is teaching us patience yet again...as they said that the soonest we will have these test results is 3.5 months from now, but could be as long as 6-8 months of a wait. IF this test still shows nothing, then they will put Kai as the #1 candidate on their research trial that they are expecting to start as soon as they get approved for the funding, which is expected to be at the end of this year. The research grant, which our genetic specialist at Duke is heading up the project for (definitely a God thing!), is funding to cover 33 patients over the next 4 years to do a test called Human Genome Sequencing. This test would cost $3 MILLION per patient (yes, THREE MILLION DOLLARS PER PATIENT!), so having Kai as a research patient for this is an incredible opportunity because the test is not offered to general patients due to the incredible cost to have it done. The Genome Sequencing looks at all those little punctuation and capitals and spacing that the Exome Sequencing couldn't look at, so MUCH more detailed. It looks at Kai's dna and compares it with every single known human disease or disorder. Each patient who has this test done gets over 3 TERABYTES (over 3000 GB of data!!!) of information on their condition!! We're going to need a library for Kai's medical records :)
So that's the testing info...and if you're confused, don't worry, so am I :)
But here's the rest of the story... today's test is estimated to cost around $40,000, which our insurance says they can't tell us whether or not they will cover until it's filed?! Seems like a ridiculous answer from them to me, as I've never bought anything else before and been told they don't know how much it costs until after I pay for it!? But I guess insurance goes by their own rules. We're praying for a miracle that they cover it without a fight, as I'm frankly worn out from fighting insurance with appeal after appeal.
The other thing is that they told us today that whatever Kai has, there is no cure, and most likely no treatment. They said he'll just need to continue his therapy weekly (he currently goes to Occupational therapy, Physical therapy, and Speech therapy every week) to try to help him continue to learn to adapt and function. His condition is definitely progressive, and has been getting more noticable and more challenging for him to function as the weeks go on, and they said that will most likely continue. You're probably asking why do we bother with such huge tests then. So here's a feeble explaination from a mama's heart... Brayden Kai is my son. I want to do anything and everything in my power to help him in any way I can. But if I don't know what's wrong, I can't help. Even if it's just to help by educating him and adapting to make things more accessable for him. They say knowledge is power. I agree. When you don't know, you are stuck. You can't walk forward because you're stuck. Just knowing, no matter what it is, you can begin to cope and process through what lies ahead. But not knowing, you just continue to wonder and feel like you're stuck in a tornado. So my mama heart needs to know. It's broken in the tornado right now. So today, although I think in my head I knew that there wasn't a cure for my sweet boy, hearing a doctor say it aloud for the first time really hit me like a ton of bricks. It's my boy. My son. My fighter. And I wish that I could take his struggles on me and struggle instead of him. I'd give anything to do that. But for some reason, God chose Kai to fight through this challenge. I've been struggling a lot with my faith the past few months. Trying to hold on to God being a good God who loves deeply and never lets us out of His grip. My boy has showed me a lot, taught me a lot, and challenged me a lot. But today, I realized in a new way that God IS a good God. And He does care. And if I take the time to notice, I can see His fingerprints throughout each day despite the struggles. Little things...like the rain, friends who give amazing hugs when needed, friends who are willing to watch my kids at the drop of a hat, laughter of my kids, songs that come on the radio that make me smile with fun memories, tears, breezes on a hot day. The fingerprint list goes on. So today, as I got back in the car with my emotions overwhelming me after a long day with the specialists, I turned on the radio to hear this song... "Our God" by Chris Tomlin: http://www.youtube.com/watch?v=XkljgA5SQc8 "my God is greater, my God is stronger....my God is HEALER, awesome in power..." I'm slowly learning to pray with faith. It's a struggle, but today, for the first time, I prayed for healing for my Kai. That may sound crazy to be the first time I prayed this, but I fully admit my faith is weak. But I'm praying it today, and will try to do the same with faith tomorrow, and the next day, and each day after that. That healing may come here on earth... I mean, how AMAZING would that be if the doctors looked at Kai one day and suddenly he was healed after we were just told there was no cure?!!! I mean, talk about God showing up and changing lives right there in front of us!!! But I also know that healing may not be until Kai's life here on earth is over and he's with Jesus, and that's ok too.
So thus begins another wait... but as I wait, I'll continue to look for the fingerprints of God in each day. I'm sure some days will be better than others, but help me see those when I'm looking down instead of up. And please continue to pray with and for us. There's a long road ahead...but we have to remember to take it just one step at a time, one day at a time, and hang on to our HOPE. That's all we have... so we wait...
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