HEWITT, TX-- Britta turned four in December. This girl amazes me every day. We worry about her so much and whether she'll be strong enough and able to make it through a day of kindergarten next year. She makes progress all the time and we are always wowed at things we never thought she'd be able to do (like ride a bike for instance... she's been riding a bike (with training wheels) at physical therapy the past few weeks).
This was a big year for our family, especially for Britta. Our move to Waco led us to discover what is wrong with her little body. The doctors at Seattle Children's were never able to figure it out-- and we saw SO many doctors there! After we moved to Waco, we found this really great pediatric physical therapy center. It's called Elite, and Britta's physical therapist is the BEST. She suggested we see a doctor in Fort Worth at Cook Children's Hospital to get Britta a specialized pair of braces to help her walk more stably. Well, we made an appointment, and the doctor there insisted we figure out what Britta's real issue was first. Apparently in the last few years there have been more panels of tests that have been developed that didn't exist when Britta was born. So, we ran some of those new panels (more specialized muscle issues). Sure enough, one of them came back positive. Britta has something called titinopathy. Basically, one of her DNA strands is missing the "titin" gene... which more or less makes your muscles bounce back after they move-- which explains her muscle laxity.
After all these years of wondering, we are grateful to know why Britta is the way she is. Frighteningly though, since our hearts and lungs are also muscles, titinopothy also affects those too. So for the rest of her life, we'll be getting her lungs and heart checked frequently. Her first scan in November showed that so far her heart and lungs are doing great. We are so grateful. Even more miraculously in our move to Waco is that Cook Children's sends their cardiologist and pulmonologist down to Waco once a month, so we don't even have to make the two hour drive to Fort Worth to get Britta checked. We can do it just a few miles away from our home. God's hand was in this move to Waco, 100%.
We've been sick more this past year since we moved to Texas than I swear we have our whole lives. We joke that we are allergic to Texas. I think all the allergies have hit me and Britta the hardest. She seems to always have a runny nose and picks up any sickness going around-- which is not fun.
She finally got braces that she wears from sun up to sun down, basically. They help her walk SO much better and more stably. So grateful for modern medicine!
Britta loves having fun and being silly. She likes to joke around, says the funniest things, and is the cuddliest little cute thing ever.
She's learning all her letters, how to write her name, and do all the things she'll do in kindergarten next year. Hoping to teach her how to read this year too.
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