Tonight the boys were playing in the basement, and I noticed Teddy wearing a running medal. I asked AJ if he helped put it on Teddy. He said he hadn't and then got all excited. "Teddy has a new skill! He learned to put on running medals. That's a new skill for him!"
Now, Teddy can put things around his neck, but he usually pulls them right off. So this was sort of new for him to leave them on for a period of time. What made me chuckle was AJ celebrating this as a new skill ... not the language you hear from most 5-year-old boys. His word choice made me laugh, but his enthusiasm for Teddy's accomplishment kept the smile on my face longer.
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.
How awesome is this⁉️ YAy for Teddy and AJ‼️❤️
ReplyDeleteThey're both pretty special boys!
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