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!

Rare is Rad!

If you don't love someone with a rare disease, you probably have never heard the phrase show your stripes. The idea is that we look for the most common explanation, so we think horses when we hear hooves. The rare explanation of a zebra is also entirely possible.

The journey to Teddy's diagnosis was filled with looking for horses and never finding them. We looked at febrile seizures. But he didn't fit the criteria. We looked at all the common genes for epilepsy. But that didn't give us answers. Every test for 1.5 years was negative or normal, yet the seizures continued and the delays grew more noticeable.

When we got his diagnosis of MCAHSS1, we felt so alone as we were told he was possibly the 15th in the world. Within a month, we were welcomed into a small but incredible community.

Through the years, the name of his disorder has changed to PIGN-CDG, and our community has grown. He's been published in a research paper. We've made friends around the world, most of whom we've never met in person.

A diagnosis didn't change the prognosis or treatment for Teddy, but it helped us find out herd of zebras. And I'm the past year our herd partnered with brilliant scientific minds and expert CDG doctors to work together to find a treatment for CDG-PIGN. If you want to support our fundraising efforts, you can donate here: https://secure.givelively.org/.../finding.../kerry-blondheim

Today is Rare Disease Day. We're not alone in our rare journey. Thanks for being a part of our herd. And thanks to Jillian Halstrom Saddlemire for the

rad

shirts!

Rare is rad! We celebrate Teddy's uniqueness!

In honor of Rare Disease Day, AJ presented to his class about Teddy's disorder. He developed his presentation himself, although he invited me to join him. During the course of 30 minutes, AJ educated his classmates on CDGs, Teddy specifically and our research project. He did a great job and is such a great advocate for Teddy!

AJ is so confident and capable in sharing about Teddy's disorder.

The Best Winter Tradition: Picnic Days

One of our favorite winter traditions is winter picnics with my parents, complete with tubing on the creation my dad made called the Beast. This tubing creation has allowed Teddy to join the tubing fun since he was 1.5 years old, even when he had no body tone. We’ve done this tradition once a winter since 2014, first starting at my parent’s farm and then moving down to our land.

AJ wanted to pull Teddy in the sled. Teddy loved that.

We actually got to enjoy 2 winter picnics this year, one in January and one in February. We were blessed with incredible Wisconsin winter weather both days: sunny, in the 30s, little wind and snow on the ground. You can’t ask for better Wisconsin winter weather, especially since that combination makes snow extra packable, perfect for chucking snowballs while being pulled by the tube.

These days are some of my favorites because they’re long enough to enjoy the tubing, campfire, lunch and walks on our property, yet they’re not so long that we get frustrated with Teddy’s lack of listening skills. It’s a very manageable day, and we all enjoy them.

This is a picture of Teddy. He put Grandpa on the tractor and then ran away up the hill.

Teddy went tubing one day, but his preference is to ride with Grandpa as he crazy drives the Ranger trying to knock us off the Beast. AJ’s job is to pack snowballs for me to chuck, and Grandma hangs on for dear life. Dave enjoys that for a while before sneaking off to the river to fish.

Simple days like these are the best family time. No screens while we’re there (ignore the screens that are on the entire drive to and from) and just good ol’ fashioned fun.