Blood work And Waiting

Right now, people I will never meet are testing Adelaide’s DNA. And their findings could change so many things about her care. They drew her blood on our last trip to Children’s Mercy and froze it. It took three pricks and 11 vials, because the first 4 vials were messed up. Something about my 3-year-old, who hadn’t eaten in 5 hours, thrashing too much as they jammed needles into her arms. I was there, so I know they were 100% correct when the nurse frantically whispered, “That child is out of control. Do we need to call a code?” Adelaide wanted to rip their beating hearts out of their chests like a 1970s kung fu protagonist. I was holding her down, so I may have made the list of most loathed persons. Since the order from one campus couldn’t be used at another, we had already waited an additional 90 minutes as they called back 17 children before us. We were in a waiting room that was airing a show about twin girls, but I think the same actress played them both. There seemed to be a lot of split screens and wigs involved. Nothing at all like the clever Hailey Mills, but something so lame I couldn’t stop watching. Truly terrible. But at 75 minutes longer than anticipated and counting, it was a distraction. The guy across from us kept staring at Adelaide. She had passed uncomfortable and cranky to plotting her escape from her wretched parents and finding a dairy farm. No milk for hours. She just kept signing ‘milk’ over and over again. How do you explain that you are doing this for her good, when you can’t make any guarantees and there are no percentages of success? “A grasping in the dark.” That’s how our neurologist often describes genetics for children with polymicrogyria. Dave and I aren’t desperate for an answer. We are curious. We desire to know. We can see the many pros. We will be grateful. But we know the chances are slim, even with Adelaide possessing so many traits of Angelman Syndrome. The results will be a number of some sort. I don’t even know how they report the findings. But we took her blood and she finally had her second milk bottle in 6 hours. And insurance approved getting an estimate and we approved the estimate and gave verbal authorization to send a little girl’s blood off to a lab full of white coats and PhDs and possible answers. This may be our last stop on the genetics train. All her other blood work came back normal or slightly high or somewhat low, but none of it indicative of anything specific. It did eliminate several conditions. But we doubt that insurance will cover the next steps, if there are any. Two panels of genes. I find myself praying “Your will be done.” because I don’t know what to pray. Do I ask for a positive on Angelman’s? Which means a heart scan and a diagnosis at last. Or do we go deeper? Different? Remembering all along these tracks that none of these answers change the past, but some will give us insight for the future. God already knows and has always known. He didn’t make her this way. A fallen world did. But He allowed it for some reason. And we are all far from perfect and oh so terminal. As I restrained that screaming toddler, I just prayed that whatever we needed to know would be made known. And that Adelaide would forgive me for 26 minutes of blood draws after three doctor appointments at three different hospitals. And I wondered how that terrible Disney show had ended. All that time reading the closed captions, just to miss the wrap-up. Fake twins. My guess is that Liv and Maddie have some DNA questions, too…

 

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3 thoughts on “Blood work And Waiting

  1. Kathleen says:

    Sweet girl.

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  2. […] her on my louder-than-a-class-of-three-year-olds-eating-goldfish-crackers speaker, and got news. The news we had been waiting for …but it was what I had suspected deep down. Nothing. The test came back 85-89% negative for […]

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  3. […] left that first and last meeting, I locked a tiny bit of hope away and it kept me going through the bloodwork and waiting and phone tag. Even though it was unlikely that we would get answers, I still thought we might […]

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