This is how the bike ride ended, thankfully. |
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.
Saturday, April 29, 2023
Bike Rides and Bonus Bike Rides
Wednesday, April 26, 2023
Life is Busy
Well, it's almost been a full month since my last post. The good news is that nothing catastrophic has prevented me from posting. Life has simply been busy.
Both kids has school concerts. Teddy was remarkably chill and stayed mostly where he belonged with minimal hands on assistance until the final all-student song. Then he was really close to the piano and thought he was supposed to be the accompanist. It ended up being a really sweet moment with one of classmates, where they were hugging during the friendship song.
Teddy's always a blur because he's never still. His teacher deserves props for supporting him. |
Then we got the plague. Well, not COVID, which is technically the plague. We got nasty colds that really kicked our butts. In fact, most of us still have a lingering occasional cough, despite the brunt of the colds being more than a week or more ago. We're looking forward to summer where hopefully there are fewer illnesses.
Even though the warm weather isn't here to stay, training runs for myTEAM Triumph have resumed. Training runs are some of our favorite times, especially at the beginning and end when Teddy thinks he owns the trailer. AJ even tagged along this week for a chilly bike ride while we ran.
Yes, he's strapped in. Yes, I let him out. |
Teddy's artwork was selected for a local art show at the library. I joked that his paraprofessional must have done a nice job, as they always assist him with his projects. I do think it's really cool, though, that kids of all abilities have a chance to have their artwork displayed. Teddy could care less about his painting on display, but he was pretty excited to attend the reception with cheese and cookies, two of his favorite things.
I think the random swipe of white was all Teddy's artistic touch. |
And this week has been catchup from being sick, along with Dave traveling out of town for work and me preparing to be gone for nearly 2 weeks. So it'll be a bit quiet on the blog as we head into May ... unless AJ decides to do a guest post. ;-)