"You make beautiful things".
"You make beautiful things. You make beautiful things out of dust. You make beautiful things. You make beautiful things out of us. You make me new. You are making me new."
Case is a beautiful thing. Through him we are becoming "new". A new mom and dad doing things and going places we never thought we would. During the nightmare that was my pregnancy with Case one of the million OBs I'd see used to say his "computer programming is messed up. When your baby's computer program was put together it was put together wrong." Yesterday at the Genetics appointment they talked of how baffled they are by Case. "We've just never had a case quite like his. We know there is a reason behind all of his differences/issues we just don't know what. We are at a point where we've tested most everything we think it could be." We spent hours with the Geneticist, Genetic councilor and a student studying Genetics (they brought her in because "Case is so interesting and she could learn from him"). We went through every problem he's ever had and discussed every test already done. Are plan is to go back in November and sign a bunch of consent papers then start the Whole Exome Sequencing test. This test is new to the hospital and we are only family number 7 to take part in it besides research studies. As long and all the pieces fall into place (insurance approving it etc.) Dan, Case and I will give them a vile of our blood. They will send it out to a lab that will look at is extensively. It will take about 6 months to get results and they made us very clear that the results could be hard to swallow or could be everything but "the syndrome". The events of yesterday got me to thinking that Case is a "beautiful thing". I've come to realize that if people would stop being so busy praying for a miracle for Case, they'd be able to stop and see the he IS the miracle. "He makes beautiful things..." and thank God we are blessed enough to have this "beautiful thing" as our son.
Case is a beautiful thing. Through him we are becoming "new". A new mom and dad doing things and going places we never thought we would. During the nightmare that was my pregnancy with Case one of the million OBs I'd see used to say his "computer programming is messed up. When your baby's computer program was put together it was put together wrong." Yesterday at the Genetics appointment they talked of how baffled they are by Case. "We've just never had a case quite like his. We know there is a reason behind all of his differences/issues we just don't know what. We are at a point where we've tested most everything we think it could be." We spent hours with the Geneticist, Genetic councilor and a student studying Genetics (they brought her in because "Case is so interesting and she could learn from him"). We went through every problem he's ever had and discussed every test already done. Are plan is to go back in November and sign a bunch of consent papers then start the Whole Exome Sequencing test. This test is new to the hospital and we are only family number 7 to take part in it besides research studies. As long and all the pieces fall into place (insurance approving it etc.) Dan, Case and I will give them a vile of our blood. They will send it out to a lab that will look at is extensively. It will take about 6 months to get results and they made us very clear that the results could be hard to swallow or could be everything but "the syndrome". The events of yesterday got me to thinking that Case is a "beautiful thing". I've come to realize that if people would stop being so busy praying for a miracle for Case, they'd be able to stop and see the he IS the miracle. "He makes beautiful things..." and thank God we are blessed enough to have this "beautiful thing" as our son.
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| By the way, he rocked both appointments and blood work at CHP yesterday.:) |
I totally agree; he is a miracle!!
ReplyDeleteHe is such a special little guy! I love this post, Liz! :)
ReplyDelete