Teddy and Toto

Teddy loves tractors. 

They are one of his favorite things. He loves seeing them, watching them, riding them and especially driving them. He's to the point now where he will forcibly remove your hands from the steering wheel because he wants to drive ... because that's super safe, of course.

When we arrived at our property last weekend, we parked our vehicle on the far side of our garage. Teddy unbuckled, climbed out and ran around the garage. He continued running down the hill to the tractors and proceeded to climb on the new-to-us scooper tractor. I laughed the entire time because he knew exactly what he wanted, without seeing it, and I knew exactly where he was going.

I'm so grateful he gets these opportunities and can enjoy these things this much!

He's just a tad happy to be on Toto. 

World CDG Day 2023

World CDG (Congenital Disorders of Glycosylation) Day is May 16 every year. Since CDGs are rare diseases, raising awareness is important because it furthers research, development, and potential treatment options. Awareness is also key in connecting families who may feel lost with an overwhelming diagnosis to others who are already on a similar journey.

We celebrate World CDG day by wearing green!

Teddy's official diagnosis is PIGN-CDG. There are more than 100 different types of CDGs, all genetic metabolic disorders, yet each one manifests differently. Even among the approximate 75 to 100 individuals known to have PIGN-CDG, the disorder manifests differently in types and severity of seizures, motor skills, cognitive capabilities and more. 

Teddy was diagnosed in November 2015, when he was 2.5 years old, after nearly 2 years of search for answers for seizures and developmental delays. It took us another month before we connected with another family with this diagnosis, and our world changed for the better with that sense of community. It's been remarkable to have people from around the world join the PIGN family as they're diagnosed. Some waited decades for a diagnosis, while others had a name for their child's disorder within weeks. While each of our children are unique, there are things we share:

1. Our children are rare. They're more than 1 in a million. 
2. Our children changed the course of our lives as their parents, extended family, siblings and more. 
3. Our children will never accomplish so much of what we as parents hope and dream for our kids.
4. Our children will, however, open doors we never knew existed and show us the beauty of things we'd otherwise miss.
5. Our children will bring out the best in people, though not necessarily my best parenting skills.
6. Our children will miss out on opportunities because of their disabilities and how our world interacts with those who are different.
7. Our children will, however, experience incredible things designed to make our world accessible for them.
8. Our children are fighters. They work harder than most to master things we take for granted. (Teddy also fights with his brother, but that's not where I was going with this.)
9. Our children make us fighters. I've battled with insurance companies, advocated at doctor's appointments, requested things from strangers, worked for inclusion and more.
10. Our children are a gift. While the challenges are real, the blessings and the beauty are undeniable. 

I've shared multiple times that there's no cure or even treatment for PIGN-CDG. While that is true, our small, mighty group of PIGN families is working to change that by fundraising for research into treatment options through drug repurposing therapy. You can see our warriors in the video below, with a dove representing those we've lost. A huge thank you to my friend Ashleigh who compiles this video each year and shares it with all of us.

If you'd like to donate, any contribution makes a difference: https://teddystriumphs.blogspot.com/2022/06/pign-cdg-research-were-fundraising.html 

Bike Rides and Bonus Bike Rides

The other week we had gorgeous unseasonably warm weather, so we went for as many bike rides as possible. In fact, AJ, Teddy and I went for a bike ride the night before my team's 55-mile running relay race. AJ was up for the longer route, so we ended up doing 8 miles instead of 5 miles. 

As we finished up our ride, I turned around and noticed Teddy was missing not one, but both, of his brand new shoes. This was the first time I think he wore the shoes, as I had bought them the previous night. When I asked him where his shoes were, he just giggled.

So, despite the fact that I was done and daylight was fast disappearing, Teddy and I headed back out to double back at least a bit to see if we could find his shoes. I found the first one about 1/4 of a mile back, and he laughed like a giggle monster when I picked up that shoe and muttered choice words under my breath. 

I had planned to go 1-1.5 miles back at the most, as AJ was waiting at the vehicle, and it was late. Fortunately at 1.03 miles I found the second shoe. Apparently Teddy decided we needed some extra time to enjoy the beautiful evening. And I decided he no longer can wear slip-on shoes on bike rides. 

This is how the bike ride ended, thankfully.

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. ;-)

King of the Class

 The other week we got this picture from Teddy's teacher.

Look at that smile!

Teddy was crowned king of music class ... for his dancing!

Joy and Love

I often talk about Teddy and his joy for life. He truly has a zest for life and a joy that is unparalleled. I have never met anyone who lives with as much joy as Teddy. 

It's not every moment of every day, but there are moments in darn near every day. Some days we're so preoccupied with life or focused on the to-do list of the day to live in the moment with Teddy. Today was a day where I was able to embrace the moments of joy with Teddy, and it was truly a blessing.

He jumped for joy and bounced like a bunny to check out the lawn mowers at Lowes. We chilled (literally it was rather cool this morning, so he was cleaning frost off the seats with his behind) for 20 minutes checking out various lawn mowers, each equally fun for him!

He buckled himself into the first one. 

Later in the day he bounced into the house grinning while holding and hugging me. I don't know the reason, but it was pure joy.

After his bath this evening, he gave me full-body hugs, wrapping himself around me to get squeezes. I left his bedroom saying how lucky I was to be his mom and experience this joy and love.

Adaptive Motor Skills Class

We're fortunate to live in a community with a university that has strong nursing, social work and education programs. We've gotten a number of our caregivers, particularly through the nursing program, though we've benefited from all those programs for our childcare providers.

We've also benefited from the education program because there is an adaptive physical education class that serves as instructors for an adaptive swim class and new this year is an adaptive motor skills class that partners college students with kids like Teddy for 1.5 hours of phy ed fun. The college students work on lesson plans, adapting lessons and learning a wide range of skills, abilities and personalities. And the participants simply get to enjoy the physical activities.

Given that Teddy loves gym and being on the go, it was a no-brainer to sign him up for the class. He really enjoyed it fall semester, so he's participating again this spring. It's also nice that it's long enough that we can sneak back to eat dinner as a family in peace, or get some alone time with AJ, etc. since we don't have to be present for the class.

It's a great resource to have in our community, and I'm grateful for those who run the program and volunteer, like one of Teddy's paraprofessional staff. In fact, the night this picture was taken, she informed me Teddy felt she was bored at work and needed him to dump out all the book bins ... repeatedly ... for her to have a bit more work to do. 

At least he's cute ...

Clearly, he loves this!