Wednesday, May 31, 2017

The Difference A Year Makes

One year ago in May Teddy started taking his first independent steps. He wobbled like he would tip over with each step, but he took 3 steps. Then 4. Then 5.

Walking was not easy for Teddy. (What's the first clue? That it took him until he was nearly 3 years old to take independent steps?) But he was determined to keep up with AJ and explore anything and everything. By the end of last summer, Teddy was walking further distances with two hands held for assistance, shorter distances with one hand held for balance and brief distances independently. The instant he encountered uneven terrain, he'd drop to the ground instead of attempting to navigate it. His arms were constantly flapping around for balance.

When Teddy started school last fall, we sent along his gait trainer to use in the hallways and gym, as he didn't use it much at home for the shorter distances (other than crashing into our walls). At school, he preferred to crawl or hop because it was faster but periodically would choose to walk from place to place. At home, he walked more and more.

In winter, he walked on slippery snow for the first time by himself. He used two hands for assistance less and less. He got into more and more trouble. His arms gradually spent more time at his sides rather than flailing for balance. But he walked into every door or wall that stood in his way. His speed was full bore or crash into something to stop. We changed all the handles on our cupboards after he nearly poked his eye out with one of his crashes.

In spring, his gait trainer came home because it was collecting dust at school. That goal of walking to and his classroom? He had mastered it. His teacher said how nice it was that Teddy could walk places and allow other friends the opportunity to ride in the wagon occasionally. He had learned to control his motions enough to stop and change directions with relative ease. (He still did the occasional tumble over mid-stride, and I tried not to laugh as he toppled backward into the bathroom while walking forward across the kitchen. How do you even do that?)

This month, a year after he started walking, Teddy walked across an uneven, soft farm field. He transitions from grass to smooth services without pausing. He is attempting to walk up every hill or uneven obstacle he can find. He'd rather step on the objects instead of stepping over them in physical therapy. He's not running, but he's about as fast as he can be without running. His hands are going back up again, but now it's to play with his hair or be silly instead of flailing for balance.

Yesterday I watched Teddy take the walker that his physical therapist had pulled out for him to use for balance while stomping and kicking. He took it up and down the hall for a stroll, and it looked ridiculous, quite frankly, because he had no need for such a thing.

And yet there was a time we wondered if he'd ever be able to walk independently ... the difference a year makes indeed.

Thursday, May 25, 2017

Farm Therapy

We spent Mother's Day weekend at my parents' farm, and both boys thoroughly enjoyed their weekends. They spent the majority of their time "helping" my dad and uncle. They rode on the 4-wheeler, in the golf cart with my 94-year-old grandpa and in the tractors. They were covered in dirt from head to toe, and Teddy licked the windows of  the tractors clean ... ish.

This window is delicious!

Since Teddy's favorite place to be is outside or in a cool vehicle, he couldn't have been happier bouncing from one fun farm toy to the next. He actually rode in a tractor for nearly a 2-hour stretch, which is rather remarkable for his attention span (and the sanity of my uncle if we're being honest).

When we first arrived at the farm, Teddy made a beeline straight for the first tractor he saw. He circled it and couldn't seem to figure out why no one was there to give him a ride. He got his rides soon enough and apparently decided he was capable of climbing all the way up the ladder to the tractor. When you look at the pictures, you can appreciate the muscle coordination, planning and strength that went into that feet for this little daredevil.

At least the ground was soft.

But he made it. And he's rather proud of himself. And I'm proud of him.

Teddy's making progress in scooting along in toys and is experimenting with pedaling. He understands the concepts and is starting to get a few rotations in with the pedals. He had fun playing on a tractor more his size when he couldn't convince the adults to give him rides.

Little farm boy.

If you've never walked across a farm field, you might not appreciate that it's not the easiest walking because the ground is uneven and quite soft. That didn't stop Teddy from walking darn near everywhere in the field when the tractor was stopped to reload seed to plant.

After all that hard work, Teddy found a new way to ride in style. His favorite thing about my grandpa used to be his cane. Recently my grandpa switched to using a walker more of the time to help him get around easier, and Teddy thinks that's even better than the cane as a toy. (But he still was happy to have the cane to use as a weapon while riding!)

This is one of my favorite pictures! They're both so happy.

Monday, May 22, 2017

Reasons Why I Never Opened Teddy's Final IEP Until Tonight

Direct quote from IEP:

The IEP team determined that the specificity (wait, in the actual IEP it's misspelled as "specifity") and amount of instruction needed to meet all of Teddy's goals and objectives could not be met in general education even with supplemental aides and services.

Yeah, that about summarizes it. Do I really need any other reasons?

Tuesday, May 16, 2017

World CDG Awareness Day

May 16 is World CDG Awareness Day.

So you ask, what in the world is CDG? CDG is the abbreviation for Congenital Disorders of Glycosylation. See why it's referred to as CDG? The oversimplified explanation is that this is a group of disorders that people are born with that affects how cells function on a biological level. This group of rare disorders includes Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1), which is Teddy's diagnosis.

Given the rarity of CDG, including Teddy's diagnosis, we want to do what we can to raise awareness. Awareness is important to us on a personal level because we want other families with this same or similar diagnosis to know they are not alone, that the prognosis may not be as bleak as portrayed in the limited medical research and share the amazing support group of families with the diagnosis.

Also, awareness is the first step in generating interest. Interest is the first step to inspire someone to want to do research. Research is critical when you have a diagnosis like MCAHSS1 with less than 50 known cases in the entire world. There's not much there to research and not many reasons to invest money into that research.

But I have one really cute and important one:

So, we'll be wearing green today for World CDG Awareness Day. And maybe, just maybe, next year I'll be on the ball enough to get shirts made for our family.

Thursday, May 11, 2017

Touch a Truck

Yesterday I took the boys to something called Touch a Truck, which was basically a collection of large vehicles on display for children to explore. This was the first time we ever attended the free event, and I'm glad we arrived a bit early because the parking lot was jam packed when we left.

Our first stop was one of my (and AJ's) favorites. It was one of those advertising trucks with clear glass, so you can put in different advertisements or have people or things on display inside. AJ and Teddy got to trace their handprints on the glass. (AJ might be biased because this truck gave out quarter counters to help children save $5, loaded with the first quarter.)

From there, we checked out a police SWAT vehicle, pickup truck, semi truck, tow truck and mail truck. Teddy was so excited to climb into all these vehicles that he did an amazing job with steps, lifting his legs with no prompting even for some steps that were twice as high as a standard stair step! Perfect physical therapy for him!

I really hope this is the last time Teddy's in the back of a police vehicle ...

I was surprised that every truck had some sort of treat for the boys, whether stickers, pencils, candy or cookies. AJ and Teddy were in heaven between all the vehicles and treats (aside from the loud horns for AJ). We passed the lines for a few things like the street sweeper and snowplow, but we managed the fairly long line to explore the fire truck.

Teddy and AJ both loved the fire truck! They got to sit in the drivers seat and then explore where the other firefighters ride. As one firefighter lifted Teddy into the truck, I got to chuckle. "Ooof, this kid is heavy! Wow! He's really solid. He weighs a lot more than it looks like he does." Maybe he was surprised because he saw me carrying Teddy and helping him in and out of the front of the truck. Or maybe he just expected Teddy to be a lightweight. Maybe he was expecting a child without hypotonia who supports more body weight. Regardless, I chuckled. When a firefighter, who's trained to carry fully grown adults out of burning buildings, says my child is heavy ... well, that's saying something. 

How cool is this? They were the first handprints in the truck.

Our final stop was a transport truck, where Teddy proudly walked up the ramp and then all around the inside trailer. Aside from the fire truck, that was his favorite. There's something about the freedom to roam in a vehicle that he absolutely loves, and this one had space to roam.

We may have only been there an hour or so, but we had a lot of fun and left with very full pockets and big smiles.

Tuesday, May 9, 2017

Get in Line

I'm glad my mom was in town last night. She popped over for a quick, purely social visit instead of me abandoning her to watch our boys, which is usually the case. She arrived in time to head to the weekly MyTEAM Triumph training run with Teddy and me. My mom's been at two of Teddy's races, so she's familiar with MTT. Last night gave her the opportunity to witness firsthand how amazing this group of people is.

Teddy's angels are the folks in the neon green and bright blue shirts.

I was planning to run with Teddy, which is usually the case. Instead he ran with two of his angels from the Oshkosh 5k, a husband and wife duo. That gave me the opportunity to (nearly die because my co-angel flies faster than me) spend time with another captain. We were the first team back, so I got to watch Teddy's angels run him back to the meeting area. I heard the woman say that she got to hold his hand for half the run because he kept putting his hands on the wheels. It wasn't a complaint. It wasn't "I had to hold his hand. He's really not safe." It was, "I got to hold his hand."

Then, after Teddy's angels complimented Teddy's smile and his personality, they asked if he already has all his angels for the Bellin Run, the next run he's doing. I explained that his running buddy from Michigan from I Run 4 is coming to be his angel, along with her husband. Someone else joked that they'd need to get in line.

After I shot them down on that opportunity, they asked if he liked bike rides. They said they'd love to take him for a bike event if we thought he'd enjoy that. Unfortunately, the bike event they had in mind is when we're on vacation this summer, but how amazing to want to include Teddy in something that isn't even a MTT event!

The icing on the cake was when I finally pulled Teddy away from the large truck that stores all the race chairs. (Well, that was the worst part of the night for Teddy. His highlight was when I finally let him explore the truck after the training run.) When Teddy's angels saw how much he liked the truck, the guy asked if he liked all big trucks, including fire trucks. He said that when his work does their open house this fall, we could see about getting Teddy to come through if it worked for all our schedules.

Me blocking Teddy from the truck. He was determined.

This is exactly what MTT is about. It's not just racing and competing and giving our captains the opportunity to fly. It's about building relationships with others and helping those with disabilities become more fully included in their communities.

But if you want a shot with Teddy, I guess you have to get in line. He's a pretty popular dude.

Except when I need someone to watch him while I'm working or out of town. Then my mom somehow gets that first-in-line spot. ;-) Thanks, Mom!

Tuesday, May 2, 2017

The Rest of the Story

I grew up listening to Paul Harvey on the radio, often waiting in the farm truck to hear "The Rest of the Story" before heading into my grandparents' house for lunch. If you're not familiar with Paul Harvey, this was a segment where he would tell, in his gravely voice, some unknown details that really made something special.

With that preface, read the rest of this blog post in a gravely voice.

I shared earlier this week how a stranger stopped in his tracks to let Teddy cross the finish line ahead of him at the Oshkosh 5k. It was incredibly touching because this person was about to be the second place winner of the entire race, and he gave up that moment to help Teddy celebrate his finish.

Well, last night was a celebration dinner at a local restaurant for the myTEAM Triumph captains, angels and volunteers to share our stories and experiences from the race and build upon those relationships. The person from MTT who coordinates everything in our area said she hoped we could make it because she had a surprise for us.

It turns out she was able to locate the man who let Teddy cross first, stalked him a bit as she said, and invited him to come meet with the group. So we were able to meet Andy and thank him in person for his act of selflessness. The folks from MTT gave him pictures from the finish as mementos of his race day.

Meeting Andy showed what a remarkable person he was. First, I can't imagine being invited by a group of strangers to come meet them at a restaurant and actually showing up. Second, he treated both captains who were there as individuals, interacting positively with both of them. Third, he wanted absolutely no recognition and didn't think what he did was a big deal at all. He was amazed by how many views the video had received online.

In fact, he thanked us for letting him meet Teddy. He said that when he saw Teddy about to cross the finish line, he didn't want to take away from that moment. His direct quote was, "You could just see the joy in his face when he crossed the finish line."
Thanks to Christina from MTT for capturing the meeting of a true angel and Captain Teddy.

It was an incredible evening that left my heart so full. Not only did Teddy get to meet Andy, but we also got to spend a bit more time with two of his angels and others who fully embrace Teddy and our family. 

So there you have ... the rest of the story.

At least until we convince Andy to run as an angel for MTT and get him to be on Captain Teddy's team for an event. Then I'll write another post with the same title.

(And Dave called me weird for quoting Paul Harvey. I think he's the weird one. Who wouldn't quote Paul Harvey?)