One year ago in May Teddy started taking his first independent steps. He wobbled like he would tip over with each step, but he took 3 steps. Then 4. Then 5.
Walking was not easy for Teddy. (What's the first clue? That it took him until he was nearly 3 years old to take independent steps?) But he was determined to keep up with AJ and explore anything and everything. By the end of last summer, Teddy was walking further distances with two hands held for assistance, shorter distances with one hand held for balance and brief distances independently. The instant he encountered uneven terrain, he'd drop to the ground instead of attempting to navigate it. His arms were constantly flapping around for balance.
When Teddy started school last fall, we sent along his gait trainer to use in the hallways and gym, as he didn't use it much at home for the shorter distances (other than crashing into our walls). At school, he preferred to crawl or hop because it was faster but periodically would choose to walk from place to place. At home, he walked more and more.
In winter, he walked on slippery snow for the first time by himself. He used two hands for assistance less and less. He got into more and more trouble. His arms gradually spent more time at his sides rather than flailing for balance. But he walked into every door or wall that stood in his way. His speed was full bore or crash into something to stop. We changed all the handles on our cupboards after he nearly poked his eye out with one of his crashes.
In spring, his gait trainer came home because it was collecting dust at school. That goal of walking to and his classroom? He had mastered it. His teacher said how nice it was that Teddy could walk places and allow other friends the opportunity to ride in the wagon occasionally. He had learned to control his motions enough to stop and change directions with relative ease. (He still did the occasional tumble over mid-stride, and I tried not to laugh as he toppled backward into the bathroom while walking forward across the kitchen. How do you even do that?)
This month, a year after he started walking, Teddy walked across an uneven, soft farm field. He transitions from grass to smooth services without pausing. He is attempting to walk up every hill or uneven obstacle he can find. He'd rather step on the objects instead of stepping over them in physical therapy. He's not running, but he's about as fast as he can be without running. His hands are going back up again, but now it's to play with his hair or be silly instead of flailing for balance.
Yesterday I watched Teddy take the walker that his physical therapist had pulled out for him to use for balance while stomping and kicking. He took it up and down the hall for a stroll, and it looked ridiculous, quite frankly, because he had no need for such a thing.
And yet there was a time we wondered if he'd ever be able to walk independently ... the difference a year makes indeed.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
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