With only 18 months of on-the-job training, anyone who has seen Jordan & Lacie with Kyrie in the last year and a half knows what great parents they are. Devoted. Patient. Loving. Happy. Unbelievably, in light of January and February events, they have become even more devoted, even more patient, even more loving and in the midst of it all, they're doing anything they can to make Kyrie happy.
Making Kyrie happy right now is a little tricky. Some days are great: coloring, 'toons, bubbles, fingerpuppets and sunglasses fashion shows. Then, there are moments when you know she wants something—she'll say the same thing over and over and point—but just when you think you've figured it out, like a cracker or soup, she changes her mind and gets upset. She's frustrated with herself. She can sit in her Bumbo and color, but she can't pull herself up to sit from a reclining position nor can she really use the left side of her body. Her left hand can tentatively hold a cracker for a little while. On occasion, she has used her right hand to pull her left arm over her chest so she can touch both hands together for a round of "If You're Happy and You Know It."
After her hearing test, they discovered that Kyrie isn't hearing in her left ear. Her left eye is the one that will look at you, but the muscles on that side of her face aren't responding. So you have to watch the right side of her face for expressions, for smiling and for crying. You can tell that she wants to play; she wants to run from room to room like before, but she simply can't get her body to work like before.
Sleeping on her giant plush puppy in the living room is the new norm—for everybody. Lacie sleeps by Kyrie on the floor upon the puppy's hind end, Kyrie sleeps in the middle and Jordan sleeps on the couch. There are times when Kyrie will cry, "Mama, Mama," and point over her left shoulder, meaning that Lacie needs to lay beside Kyrie on the dog, cheek to cheek or forehead to forehead with her.
Lacie & Jordan have become a great nursing team. Lacie is The Comforter, which means that since she's on the floor with Kyrie most of the day, Jordan has to be The Fetcher. He makes the soup or gets another blanket or another round of juice, and he has to do it quickly. Every day, Lacie has to distract and comfort Kyrie while Jordan gives the injections that build her white blood cell count. They flush the Hickman line, they change diapers and they watch her for any sign of improvement or alarm. And yet when Kyrie sleeps, these two can still share the couch and maybe share a laugh. That's good love.
Kyrie goes in today for bloodwork, and on Wednesday, she'll visit her oncologist for another round of vincristine chemotherapy, just like she did last Wednesday. The vincristine is easier on her than the cytoxam. We don't have a date scheduled yet for another scan.
If the chemo successfully makes the tumors recede, Kyrie may get more control and mobility back. For that reason and for so many more, let's pray that this chemo is doing its job.
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So sorry it has taken us so long to get anything posted, but know that we have been thinking of you and praying for you every day. You are being lifted up by Central Community Church and the Hobbs Care Ring at CCC. Even Lexie has prayed for "Kyrie, you know, the one at Grandma 'Roe's."
Too bad the last time we saw you we were all on the same floor at Wesley - so glad we are all home now! :)
Call if you need anything - Love you all so much! Josh, Mandi, Lexie, and Jaren
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