A Whole New World

When people first learn about Teddy's diagnosis, a common response is, "I'm sorry." It's a natural response, especially when you're uncertain what to say, when you realize the impact of a disorder like PIGN-CDG. 

Yet that impact isn't all negative. While I don't sugarcoat the challenges, my response to people is that we have learned so much and experienced so many blessings because of his disorder. 

One of the most incredible blessings is to virtually connect with people around the world who share this diagnosis for their child(ren). This has made our world so much smaller and richer, as we've gotten to develop friendships with others walking a similar path ... though, trust me, our children don't really follow any particular path as they create their own ways. We've been fortunate to meet families on our vacations to spend time with other precious children with PIGN-CDG. It's always such an incredible experience.

Two months ago, I had the chance to travel to Europe to visit Germany and Spain. Several years ago I hatched the idea of taking my mom to Spain, as she didn't get to visit me when I lived there for nearly 6 months. Then I became friends with Marianne, a German mum to a little girl named Anna with PIGN-CDG. We quickly developed a connection, which made me realize that Germany isn't that far from Spain. So I changed our travel plans to include time in Germany as well. And then COVID happened, with the US shutting down return flights the date we were supposed to fly overseas. Our trip was postponed for 3 years, but it finally happened this spring.

My German was good enough to order our drinks the first evening. 

I loved Germany. I loved the food, the culture, the drinks, the scenery, the castles, the cathedrals, the monasteries that brew beer and the people. I loved the ease of using public transportation, the fact that people were so patient with my poor German but appreciated the efforts, the fact that people spoke English quite often and that you can walk everywhere. And the Barvarian pastries ... oh my goodness! I joked to my friend that I thought I was a pretty good baker (I own a bakery after all), but that I wasn't so sure after visiting their pastry shops. 

It was incredible to experience this culture and country, and I was especially appreciative knowing I likely never would have visited Germany were it not for Teddy's disorder. There's so many places I want to travel, and Germany wasn't on the top of the list until I became friends with Marianne. I'm so grateful for this blessing from Teddy's disorder.

The highlight of the trip was spending time with Marianne and her family. It is crazy when you meet another PIGN parent, no matter where you're from, the instant connection and familiarity with one another. It's so easy to interact with their children because we have such a similar frame of reference, despite the differences in our children's abilities or ages. Her daughter Anna reminded me of a younger version of Teddy, with some things so strikingly similar like their penchant to laugh when things unexpectedly go wrong like someone dropping something or tripping. (I think they'd both love the 3 Stooges!). 

The 4 of us went for a walk the day my mom toured Austria.

I think it's so good for us as parents to see others instantly connect with our affected children, not be afraid to talk, hold and help them. It's a level of comfort that's hard to have unless you live this life. In fact, my mom stayed behind with Anna who was napping while my friend helped me grab groceries on the first day. It was no big deal because she's spent countless hours with Teddy, so she was fine for the short time we were gone. (And trust me, on that first jet-lagged day, I appreciated the assistance in navigating a new situation.) 

So many happy hearts.

It was so bittersweet to leave, but we have hopes to meet again. We know how challenging it would be to fly overseas with our affected children, so they may never meet. But we hold hope that we can figure out meeting again in person in future years. 

It was such an incredible experience to have this trip with my mom. I'm so grateful for Dave for holding down the fort with the help of AJ and Bri. Things went remarkably well for my boys while I was gone, though all 3 of them required unexpected doctor's visits within the first 5 days of me returning to the States. Apparently they could hold it together while I was gone yet fell apart when I returned. ;-)

One Heck of a First Day

Summer vacation is here! 

And Teddy had one doozy of a first day. 

The poor kid started his summer vacation with allergy testing. I anticipated this would be horrible, tears, physically restraining him and more medical trauma. So I recruited a friend to help me because Dave couldn't get out of work. It went so much better than anticipated with no tears, minimal restraints and only 3 positive allergies. (That probably contributes to why there was only minimal restraints to keep him from scratching.) We have a game plan to better treat his allergies and a follow up appointment to continue testing to rule out one of his two remaining antibiotic allergies listed in his medical chart. That will be nice to open the door to more antibiotics to treat all the crud he catches.

Then in the afternoon, he wanted to help me unload cinder blocks and didn't realize how heavy they were. His block he insisted on grabbing fell straight down his shin, scraping and bruising it. Still no tears because he's a tough cookie, but ouch!

The finale to the day was after a great bike ride with myTEAM Triumph. Teddy has now mastered the skill of unbuckling from the race chairs (great, but oh no!) and took off running. He fell off the sidewalk and face planted onto the curb. That resulted in a couple more scrapes, a bruised and cut lip and the real kicker ... 2 front teeth chipped significantly. Guess what, though? Still no tears from Teddy although you could tell he definitely felt the pain. AJ, on the other hand, felt responsible because he was trying to catch Teddy, and he cried for almost 2 hours. He has such a big heart.

His new nickname is Toothless from How to Train Your Dragon.

So, needless to say, on Teddy's second day of summer vacation, he went to the dentist. That was uneventful because they need to wait until the swelling is down before they try to seal/cap them. I don't anticipate that appointment will be so uneventful (or even successful), but I guess we'll find out in July!

Now, if the rest of summer break could be fun and we don't actually break anything else, that would be great!

Fourth Grade Finished!

Teddy's officially a fifth grader. I can't believe next year will be his last year at Franklin Elementary School. I won't lie. I was devastated when he went to Franklin because I had envisioned both my boys at the same school. I desperately wanted AJ to be there to advocate for Teddy, to share about the snippets of his days and just to be a familiar face.

Fast forward to now, and I know I'll be devastated when Teddy leaves Franklin. He has so many who advocate for him at his school, so many who include him and welcome him with open arms (until perhaps he starts rolling up in their blanket fort and chewing on their blankets, which is understandable), so many friends who say hi to him randomly in the community and invite him to fun parties and so many who share snippets of his days. I swear just about everyone at Franklin, kid or staff, knows Teddy. 

This 5th grader is ready for a summer of baseball fun!

At the end of the school year, we asked his team to sign a book for him. I think he came home with 6 or 7 new notes. The most common theme was Teddy's smile, how much joy it brings and how he makes others smile. The second most common phrase was "keep me on my toes." Both are so true of Teddy.

We're so grateful for an incredible team that includes so many people:

• His teacher
• His 4th grade teacher
• His OT and her assistant
• His PT
• His speech therapist
• His nurse
• His nurse assistant, who administered his meds daily
• The incredible group of paraprofessionals
• The student teacher (Teddy taught her well I imagine)
• The tech person who supports his device
• And all the others who keep him safe and include him

It's been a good year, and now we're ready for summer! But where's my team to keep him safe for summer?!?!? (More on that to come in a future post - it's been an adventurous first week of summer.)

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. ;-)