I'm not sure I could be more proud of both my boys than I was today.
AJ and Teddy were playing nicely together when all of the sudden AJ runs out of the room without an explanation. He comes back with a Kleenex and proceeds to maneuver around Teddy for 30 seconds trying to get all the snot out of Teddy's nose and then throws the Kleenex away. Seriously, how many 5-year-olds wipe their own noses, much less the noses of their little brothers? Especially without any prompting? (Don't worry. There were plenty of moments they weren't playing nicely together, too. I won't pretend that they always do.)
And that snotty-nosed Mister Teddy? Today he walked all the way to the end of our road and back, holding only one of my hands for support (and for me to keep him from exploring every open garage door). That's nearly 1/4 mile, and he didn't fall once. Although Teddy's been walking independently for more than 6 months, this is a significant milestone for me because this was a goal we had established for Teddy during the Birth to Three program. I was so excited that I e-mailed his team from that program, even though they no longer support him.
To top off that amazing walk, Teddy helped Dave open his birthday presents. For the first time I can recall, Teddy opened not one, but two gifts, by himself with absolutely no assistance. In the past, he's opened presents with some prompting and help getting things started and redirecting him when he loses focus. Tonight he deliberately opened two gifts.
So proud. Not much more to say than that.
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.
Go, Teddy! I just love, AJ 💙
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