Six months home and medical update

Thank you to everyone who has asked for an update on our prayer request for Kira’s medical needs. Finding the time to write an update while tasks stack up and nap time gets shorter has been tricky. Kira has been home for a little more than six months now, and some of my procrastination in writing an update is that she is changing and growing so quickly I don’t know where to stop the clock and write it down. So here is a quick medical update and a snapshot of toddler life as it stands today.

Medical

After seeking a second opinion for Kira’s spinal cord malformation at Mayo Clinic, we decided to schedule surgery there. The U of M doctor and Mayo doctor said practically the same thing, but there were small differences that made Mayo more appealing. It is a little trickier for us, as being in the Twin Cities provides us with all our family and the associated beds and people available to drop off coffee. :) 

Surgery is scheduled for Wednesday, January 8, 2020. We were told to expect 4-5 days in the hospital. I realize I have not asked enough questions about what recovery at home looks like after those days. One thing we were informed of is that a child Kira’s age bounces back from a spinal surgery more quickly than an adult would. The muscles are not as tight and deep as in an adult. The surgery will untether the bottom of her spinal cord where it is essentially tacked down rather than dangling as it should. They will also investigate a second part of the malformation—a split spinal cord. For one portion of her spinal cord it splits into two, one part controlling her right leg and one part controlling the left. The doctors want to make sure there is nothing in between the two parts that would damage the cord or inhibit its growth in the future.

We are feeling relatively at ease about the surgery and pray that God will continue to give us peace as we put our precious girl in the hands of others.

Growth

In six months, Kira seems to have gone from baby to preschooler. The pants we brought for her to India that were long enough to slip slightly under her heels now only reach just past her knees. Her sagging 12-month onesies have been traded in for 2Ts. And Lord, give us grace for the day when the increasingly snug “kitty shoes” won’t fit any more. Some things have stayed constant though, as she continues to love shoes and bows. With the onset of winter and a new category of accessories, her new favorite word is “soft,” and she wants to point to or or feel every soft thing she sees. Our last trip through Target took a while, and we nearly had to go home with an XL women’s sherpa sweatshirt she was not keen to leave behind.

Kira and I flipped through some videos from our time in India today, and I was struck by how little her voice sounded. Her sounds and laugh sounded unpracticed and baby-ish. Today, we have lost track of the number of words she uses, she has a well-rehearsed belly laugh, and she can name every letter of the alphabet! This is not owing to any amazing education or parenting on our part, but mostly from her sponge brain and a Leapfrog laptop toy. :) We didn’t even realize she was picking up her letters from it, but once we realized she could recognize her letters we started quizzing her on them frequently. 

She has one intelligible sentence with a few variations. She says, ”Love you ____,” typically supplying the words “mama” and “daddy” in her sentence. She has started listing other things she loves though—“shoes” and “coffee” being my favorite choices. (I made the mistake of giving her a taste of coffee thinking she would stop asking for it once she tasted it. It backfired. She joined the crafted press fan club.) We also have a series of questions and answers—a catechism of sorts—that she recites answers to. We routinely ask her “Who made you? – God. What else did God make? – Everything. Who loves you most? – Jesus,” and six more questions at this point. While it is amazing to have a way to occupy her mind or distract her in car rides and such, we hope and pray that she grows to believe and understand the answers she’s supplying. 

Kira continues to be a stellar eater and a champ with her glasses. Her hair has grown enough to allow us to style pigtails, which she gets super excited about. Lest it sound like we’re living in dreamland, she is as well-practiced in testing mom’s patience as any toddler, but those instances are not chronicles for the internet. :) 

Lately I’ve been so thankful to God for the ways he’s given Kira and I similarities despite no biological connection. Kira loves the soft and snuggly things and giggles at finding and feeling “big co” (big cozy blanket), just like I have always loved soft and cozy things. She also loves orderliness and organization. (Makes mama’s heart so happy!) She can sort her spoons, forks and knives in her drawer, put all her toys back in the respective bins and clean up without much arguing. She wants buttons buttoned and zippers zipped. If she doesn’t get the silverware turned right-side up and sitting straight when she helps set the table for dinner she has to go back and fix it. She probably has more similarity to me in this way than a biological child would, because a biological child would be half David after all… ;) 

Thank you friends, new and old, for continuing to encourage us and love our sweet girl. 

Instagram: @davidcapistrant and @kcapistrant