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Sam + Teddy = All smiles! |
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These two are something else together! |
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.
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Sam + Teddy = All smiles! |
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These two are something else together! |
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Train rides are one of the best things! |
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Teddy and his new best friend, all smiles! |
Oh my goodness! Today was the perfect summer day thanks to Graceful Wakes. This amazing organization partners with local water ski clubs (in this case the Rock Aqua Jays down in Janesville) to host accessible water skiing clinics for people of all abilities.
Teddy participated in this program last year for the first
time and had a great day despite pretty crummy weather. This year our entire
family went for the day of fun and enjoyed perfect summer weather and sunshine.
Teddy got to ski 3 times and was so excited each time. The
last time he even was waving as he came back to shore. The skiers sit in a
chair mounted on a ski, so even people who cannot walk can have a go at water
skiing. They have side skiers on either side of the chair to hold and support
the individual skiing in the chair.
It’s incredible the amount of volunteers who make these clinics happen. Picture almost 25 people getting up to 3 turns skiing, assisted by 2 buddies each time, plus another couple people in the water assisting with getting into the chair and catching when the skiers return, plus boat drivers, announcers and photographers. We’re so grateful they chose to give their time and talents to allow our family to enjoy today.
Teddy also got to hang out on the pontoon boat. We missed
the few rides they did, but we asked if we could sit on the boat earlier in the
day and were welcomed aboard. That was great since Teddy is obsessed with
pontoons, and that’s all he wanted in the moment.
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Just call him Captain Teddy. That's what he thinks at least. |
He also got to enjoy a tubing ride with AJ, and AJ managed to sneak in a second tube ride. It’s such a fun treat for our kiddos since this isn’t something we normally have access to do.
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The boys enjoyed their tube ride ... a lot! |
It was extra cool to have one of our MTT friends Raymond and his family there as well, so we got to visit with them. Plus one of my running buddies now lives in the Janesville area, so she and her family joined us as well to watch Teddy’s first run.
Then on our way home, we had to stop at the World’s largest
Culvers (a Wisconsin custard and fast food restaurant). The real treat was we walked
into the restaurant right ahead of my aunt and cousins from Mississippi—they were
headed home from a week at my parent’s farm. We hadn’t planned it, yet our
paths spontaneously crossed.
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Such a serendipitous moment! |
This goes into the memory bank as a fantastic summer fun day—we’re so grateful for these types of opportunities. Sometimes we have to fight for things for Teddy, and these types of gifts of accessibility and inclusion are even sweeter than the best custard in the world.
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.
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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.
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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.
The other weekend Teddy and I went for a hike together at a local nature preserve. Teddy was super excited to spend some time outdoors in the woods. He loves running through the woods, and it’s great for him to practice his stability.
Since this preserve was in the path of tornado-like winds the other year, there’s still tons of down trees, paths blocked and even more bramble that seems to be right at eye height. So Teddy got plenty of practice ducking and even had to crawl under some trees. He came away with no scratches and both eyeballs still intact, so that was a success.
We probably spent about an hour walking and covered about a
mile, not bad for Teddy and the terrain and all the breaks he took to sit on
the ground because he didn’t want to go any further (or he wanted to go the
opposite direction). While I’d love to hike longer and further, this hike was
so enjoyable because I went into it with no expectations and let Teddy lead our
adventure for the most part.
He thought it was hilarious that he was running and sliding
down a hill (with a steep cliff dropping to a river on one side), but
thankfully he slid right into a tree that was downed across the trail. That
stopped him and allowed me to catch up to him, giggling hysterically. (Him, not
me, although I did chuckle after telling him he almost died.)
Although Teddy is persistent, he does fall pretty often. He
doesn’t mind those falls and will often pick himself up and keep running
without pausing. Yet he also took advantage of these breaks to munch on snow. I
know many kids like to eat snow, but Teddy takes eating snow to a whole new
level. He’ll eat it straight off the ground, scoop it up to eat it or lick it
off tree branches. In fact, when he didn’t want to head back to the car, I kept
scooping up the cleanest snow I could find to offer him “snow snacks” to keep
going.
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Teddy munching on his snow stick. Weirdo. |
This was a great adventure with Teddy, and I’m grateful for afternoons like this.
One of Teddy’s favorite things in the whole wide world is busses. (Other favorite things include tractors and water slides.) Earlier this year he won a free bus ride pass, which might seem like an odd prize for a 9-year-old like Teddy, but it was a great opportunity for a fun adventure this summer. His sitter took him to the bus station, and they simply picked a bus to ride for the entire route. He was so excited to actually get to ride the bus. I say that because he’s excited to simply see a bus and watch them at the bus station.
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Teddy invited (directed) Sigrid where to sit. |
They rode the entire route, and then they switched buses for another loop. Although Teddy is usually a constant bundle of energy and motion, he was content to stay in his seat the entire ride. He did check out other seats when the bus stopped, but he always went back to “his” seat for the ride.
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They both had a great time exploring together! |
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Teddy was in his happy place. |
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Teddy was loving his ride! |
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Thanks to Graceful Wakes and all the volunteers for making this magic happen! |
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Look at that joy! |
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Teddy with one of his biggest fans and his amazing buddy! |
Hello everybody, This is AJ. I am Teddy's Brother and I wanted to share three cool things with you. I hope you enjoy what I've got to share.
I love being Teddy's big brother. Teddy is great at smiling and cheering you up. I've got to do many amazing things with Teddy like watching him waterskiing, going tubing with him, going to the movies, going to the zoo, and so much more. With Teddy Life is an endless adventure. He is the best brother that I could have wished for.
On Friday Teddy had the amazing chance to go waterskiing with Graceful Wakes and volunteers from Rock Aqua Jays. I was able to photograph Teddy waterskiing here are some of my photographs. It was amazing and I am very grateful for the opportunity to do it.
Also in the last post my mom said how I was selling fidgets as she said I am selling fidgets to fundraise money for a possible treatment to help with seizures. They are $10 a piece and I have the colors Gold, Glow in the Dark, Copper, Silver, Red, White, Black, Green, and Rainbow Glow in the Dark. If you want to order fidgets go to https://forms to order.
Here are my photos!
YAY That was fun! |
Where almost done. |
Comin in HOT!!! |
Where off! |
See ya later. |
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This star arrived with his fan club, including beautiful adoring women. ;-) |
It's an exciting day, folks! Today is Teddy's first game with Miracle League, which is an amazing organization that gives kids with all abilities the opportunity to play baseball. The league plays on an adapted field, which is completely wheelchair accessible, as many players use wheelchairs or have mobility issues. Each player is matched with a buddy who assists them with batting, fielding and hangs out with them during the games, so that parents and families can truly be spectators.
We've heard nothing but good things about this program and finally decided to sign Teddy up because he loves being around people, and he gets a huge kick out of running around baseball diamonds. He was so excited to sit in the bleachers last week when we picked up his gear and met his coaches. It was amazing to see all the different kids who are going to play ball this summer, who all get to be included and participate in a way that works for each of them.
I can't wait to share his baseball adventures with you!
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Can you tell how excited Teddy was to meet his coaches?!? |
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Wendy with her beloved Peter Pan and his Shadow. |
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This was the few moments Teddy was actually with the kids. I'm not creeping behind him. Oh wait ... |
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Check out the amazing view from the Ferris Wheel. |
Well, that caption is a bit misleading. MyTEAM Triumph (MTT) has been doing training runs for quite some time, with only a relatively short hiatus due to COVID. However, we only ventured out this summer for training runs while keeping our distance still. That means rather than sharing pushing duties with other angels, I'm responsible for pushing my lunk of a captain. (OK, he's the lightest captain at the training runs, but still ...)
Although I'm still responsible for pushing Teddy, we both get some socialization. We get to see our MTT friends. Teddy gets to venture into his beloved trailer. Seriously, the first training run we returned to he used a bungee cord to attach himself to the trailer. It's good for both of us. It's also a nice break for AJ and Dave to have some non-Teddy time.
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The heat doesn't faze Teddy. It fazes me. |
But I swear every Monday is the hottest day of the week. If you look closely, you can see Teddy's holding a squirt gun. We took along two squirt guns for Teddy. He spent much of his time squirting himself and drinking the squirt gun water. He did have fun squirting a few of the other angels and captains. He even managed to squirt me a few times, which was seriously needed.
I doubt we'll make it back to events yet in 2021, but I'm crossing my fingers that next year we'll be back at events and at training runs every week. Until then, we'll enjoy the camaraderie from a bit of a distance.
Our boys started their summer this week with so much fun this week. Their one sitter took them to visit their other sitter. They spent the day playing at a lake, splashing and swimming in the water to beat the incredible heat wave and even boating.
I got texts of videos showing the fun they were having. My reply was, "I'm jealous. That looks way more fun than work, as long as you are in charge of Teddy and I'm just in charge of mojitos."
It's such a blessing to have not one, but two childcare providers who are an extension of our family, who choose to spend some of their downtime hanging out with our family. Extra hands are always helpful with Teddy, particularly around water. He got to hang out on a boat, which he loves, and he got to spend time with two of his favorite people. AJ is ecstatic any time he gets to go to the lake.
We're blessed. Now I just need to find a day to take off and enjoy mojitos while I watch them wrangle the boys.
Last night Teddy asked to go outside to play, so we headed out with a beautiful snow falling. My intention was to get the driveway cleared, so that it would be easier to finish in the morning. Teddy loves dragging shovels around, so I was optimistic I'd be able to get the driveway shoveled. None of the neighbors were out, and all their garage doors are shut, which was good because those are instant magnets that lure Teddy to them.
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This was earlier in the day, before the snowfall. It was dark by the time we had snow. |
Well, after about 5 minutes, Teddy thought it would be funny if he made his way to the neighbor's driveway. It took him several minutes because he was dragging a giant shovel and trudging through a couple feet of snow because he walked through the lawn. He was laughing the whole time, knowing he was being mischievous. I waited until he was close to heading up their walkway to go retrieve him and bring him back to our driveway. No sooner did I start shoveling again did he take off for another neighbor's driveway, laughing the entire way, with his shovel in tow. Once again, I kept shoveling until he got nearly to their door and then ran over to retrieve him.
Fortunately, each time he willingly walked back to our house, instead of flopping to the ground like a 70-pound sack of flour. We headed back and resumed shoveling our driveway. He made a couple passes before he took off for a third neighbor's driveway. When I went to retrieve him that time, he was literally collapsed in the snow in a fit of giggles because he thought he was absolutely hilarious. Each time he'd fall, he'd eat the snow off his mittens or the ground, which is pretty standard for Wisconsin children during fresh snowfall.
He made it to a fourth neighbor's house before I tried to encourage him to bring out our garbage bin because it needed to go out for the morning anyways. He interpreted that as go to the neighbor's bin and attempt to drag it to our yard. That let me finish the shoveling, as much as I could, before I retrieved him one more time. That time the garbage can flipped and dumped a pile of snow in his face. I just chuckled and told him he deserved it.
I had thought it was odd when we went out to shovel that there were footprints leading to our door, until I saw that someone's dog had traipsed through our driveway and around our house. I can only imagine what our neighbors thought with random shovel passes, lots of little and big footprints and flop marks.
It's winter in Wisconsin, which means the Beast made an appearance (hopefully the first of several for the season). If you've read this blog for a while, you've likely seen posts each winter detailing the fun we have with the Beast. This past weekend, we headed to our land for a day of playing in the snow.
The drive was absolutely beautiful due to the heavy frost from the fog that covered all the trees in a blanket of white. We arrived to discover the deathtrap of a deer stand was blown over from heavy winds (and quite a few shotgun shells), so that pleased Dave. It's on our list to get that down and cleaned up, so that we don't have an additional hazard to tempt Teddy.
We discovered that our hill with the garage is perfect for sledding and tubing. The boys had so much fun playing with Ms. Bri, our nanny who came down to play for the day with us. AJ loved sledding with her while Teddy rode on his beloved Dorris (the tractor) with Grandpa.
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We raced down the driveway, making the most of the tubes. |
My parents brought the Beast down for the day, so we all got turns riding on the Beast and trying to have snowball fights while driving and riding. It's tough to nail those on the Ranger with snowballs from behind, but we put forth a good effort. It's tough to say whether Teddy likes the Beast or the Ranger better, but I think he likes the option of both.
It wasn't a sunny day, but it was fairly enjoyable in the 20s. We needed all the variety of layers to keep switching Teddy into dry layers ... seriously, changing a diaper through all the winter clothes is a pain in the tush! Next time, we'll make sure we build a fire sooner for s'mores and additional warmth (although Teddy isn't one to stay near a fire to warm up without getting into trouble). We still managed about 5 hours of fun before heading home.
We're already looking forward to our next winter play day at the land. (And Dave is looking forward to his next opportunity to do some early season trout fishing!)
In Wisconsin, we get what you could aptly call a winter wonderland. We get a blanket of snow, perfect for sledding, traipsing through, snowshoeing, skiing, building snowmen and forts and the like. We also get beautiful days in the 20s or low 30s that are perfect for enjoying the snow and nature. We also get days where it's so cold that it hurts to breath outside. With the exception of a few wickedly windy or cold days, we're able to enjoy time outside most days as long as we dress appropriately.
Despite temps around 10°F (without factoring in the wind, which always makes it feel colder), we went for walks on Christmas Eve and Christmas Day. It was wonderful to be in the woods, enjoying the stillness and the natural beauty that exists even without snow. The day after Christmas, Dave and Teddy did a nice mile loop while AJ tried out his new bike and I chased him huffing and puffing for 3 miles. Let's just say that a 7-speed bike increases his pace that I'm going to have to do some speedwork to hang with him this upcoming summer. Then on Sunday we explored a new-to-us wetland with a boardwalk into the water and a trail of sorts through the woods.
The challenge on all these walks is whether we chase Teddy, who doesn't have the stamina for a mile-long walk, takes off running in random directions and sometimes flops to the ground and refuses to move. That's a challenge if we still have a long ways to get back to our starting point, so for longer walks we'll take his chair. He can get out for portions but can also be safely contained and transported rather than a fireman carry as he actively resists. So we took his chair to explore the new wetland place, which worked great for the boardwalk and part of the trail. Then the trail became non-existent aside from markers on trees. Dave and I each took a handle and pulled his chair backward to navigate the rough terrain. So on the way back, we took to the ice for a much smoother (and more fun) ride. I could even spin Teddy 360° in his chair on the ice. AJ had fun exploring the bubbles in the ice and all the other little wonders of nature.
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Note the "trail" as Teddy enjoyed peering through a hole in the ice. |
That afternoon we got several inches of snow. I bundled Teddy up and headed to a park that was empty. We spent close to an hour playing in the park, whizzing down the slides. (For those of you not native to winter wonderlands, a sprinkle of snow makes slides faster. As a child, we'd carry handfuls of snow to the top of the tall slide and dust them on to make our trips down even faster.) It was really enjoyable to just follow Teddy where he wandered and let him do his thing (aside from the construction equipment that we weren't going to explore). We both love being outside, and it was great to enjoy it together.
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This face mask keeps him warm and lets him chew on something-double win. |
On a side note, I'm grateful my new snow bibs fit both our sitters because they have many snowy days to play with the boys. Lucky them, right?