Merry Christmas Eve

There's something nostalgic about trains at Christmas time. Whether it's the somewhat more recent Polar Express or the idea of a train around the Christmas tree, trains simply go with Santa. This year one of our gifts for Teddy was to head to the Mid-Continent Railroad in North Freedom, WI for the Santa Train. We did this in early December, and it was the perfect family adventure.

Teddy was so excited about this trip. Though he can't talk, he told everyone who came to our house about the train ride by showing them the brochure and pointing specifically to the Santa picture. This was for a couple months leading up to the adventure as we had the brochure on the fridge. 

The trip didn't disappoint for him, as he was so excited when we pulled into the train station. The only disappointment for him was that the museum had hardly any train cars you could climb on to explore, unlike the one we visited in Duluth earlier this summer. He thought he should be able to explore every car, even trying to sneak onto a few because that cord across the stairs is clearly not meant for him. 

The train ride itself was pretty darn perfect for us - about 1.5 hours with enough going on to keep Teddy mostly in his seat. As a parent, I appreciated that all that was advertised was a quick visit by Santa, so everything beyond that was a pleasant surprise. Santa started in our train car and made his way with Mrs. Claus to take pictures with every family and have a quick chat. Of course, Teddy invited them to sit down by him. 

All smiles for Santa and Mrs. Claus.

After Santa moved along, we heard a reading of T'was the Night Before Christmas and got little stockings with a few treats for the boys. Oh, we also got a rubber duck dressed as a conductor that Teddy thought was pretty cool. 

Showing off his rubber ducky.

The train only went a short distance down the line before it turns around, so we didn't cover a lot of ground, but it was very scenic. On the way back, just as Teddy was getting a bit squirrely, we had a group of high school students come into our train car to sing carols. Teddy thought that was the best to have a group of pretty girls (with a few guys, too) standing right by him, smiling and singing to him. His absolute favorite was Jingle Bells because he got bells to play through the song.

It was a truly wonderful experience, something we all could enjoy. Afterward we checked out a candy store on the way to our second main destination, Buffalo Phil's, a restaurant in Wisconsin Dells. We had wanted to check this place out for a few years due to two features: food delivered by trains and all the Lego displays. Let's just say neither disappointed for AJ, especially the entire Star Wars Lego room with nearly all the Lego Star Wars in existence. However, Teddy was freaked out.

Now, to be fair, eating in a restaurant with Teddy is usually a quick affair as he has no willingness to sit still for any amount of time, wants to socialize with others, etc. Sometimes he's just in a mood, slithering out of the booth and seeming to intentionally create chaos. This time, though, was different. Something he saw or experienced in the restaurant freaked him out, whether it was all the life-size characters or who knows what exactly. But after our drinks came and he went for a walk because he was a bit antsy and there was a lot to see, we could barely get him back in the booth. In fact, he and I stood by the booth just waiting to have our food come to put it in to-go boxes for him and Dave because all he wanted was to go back to the car. 

This type of thing is happening a bit more, where he gets genuinely freaked out and needs to leave someplace because it's simply too much for him. While it's frustrating to not be able to enjoy a restaurant we thought was about as close to a sure thing for our family as would exist (with the trains), it's understandable when it's truly fear versus just being sassy, so to speak. I wish we could figure out, though, what triggers these moments of freaking out to better navigate them.

Regardless, it was a fantastic family day and definitely something to repeat! We'll just skip that restaurant next time. 

All the Sicknesses

As usual, it's been much longer than intended between posts. To be fair, though, I feel like our household has been ill since mid-November. 

It started with a phone call that Teddy was suspected of pink eye and needed to be picked up from school the Friday before Thanksgiving. That required a visit to the walk-in clinic, of course, to get medication and clearance to go back to school. As an added bonus, we learned he actually had strep throat on top of the pink eye at that visit, so he got prescribed 2 different antibiotics. 

You'd think that would be enough to keep him healthy, but nope. We finalized our Thanksgiving plans at 6 p.m. Wednesday night before Thanksgiving, only to have Teddy start vomiting at 8 p.m. After 3 to 4 projectile vomiting sessions, with him completely miserable, Dave took him to the emergency room at 9 p.m. They celebrated (umm, probably wrong word choice) the start of Thanksgiving in the ER, getting home after 1 a.m. after getting fluids, IV anti-nausea meds after throwing up the oral ones and IV keppra. 

AJ and I managed to still visit my folks for Thanksgiving, while Dave and Teddy stayed home recovering. Seriously, who gets a 3rd illness while he's being treated for 2 other ones?!?!

That recovery didn't last long, though. We had perhaps a week where Teddy was feeling better before the respiratory illness started. After watching him lay on the floor just staring at us putting up the Christmas tree without causing any trouble or "helping" at all, we knew he was definitely not well. After seeing a temp over 100, along with the lethargy, we headed back to the walk-in clinic for visit #2 within 2 weeks or so. 

That visit prompted visit #2 to the ER because we got sent there instead due to his high fever, low oxygen, high pulse and high blood pressure. His temp was over 102 by the time we were in the ER (even after having Tylenol 30 to 60 minutes earlier), and he was miserable. They checked for all the viral illnesses (flu, RSV and COVID) along with a chest x-ray to look for pneumonia or bronchitis given the persistent string of illnesses. All that came back negative, so it was some other virus kicking his butt.

Walk-in and ER visits #2.

Thankfully he was through the worst of that in just a couple days, though I swear that cough and crud has lasted for more than 2 weeks still (with the rest of us getting some lesser variant). While we're sick of being sick, one of the biggest blessings is that despite all the illnesses, he had no seizures. That's tremendous, considering strep throat has kicked off wicked seizures, as has multiple illnesses at the same time. 

I'm also grateful that the time and effort I've put into therapy this year (particularly EMRD to process his 2 worst seizure episodes) really has made a difference. All these illnesses were the perfect test to see if my anxiety when he's ill improved, and it was a remarkable difference. While it's still no fun with sickness, especially with a non-verbal child who can't tell you how he feels and what hurts, the constant worry about seizures and worst-case scenarios wasn't there. 

So here's to hoping to finish the end of the year healthy and that the worst of our winter illnesses are behind us!

Diagnosis Day

Our lives changed forever 8 years ago. Teddy was diagnosed with PIGN-CDG, though at the appointment the name was Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1). Even though that name was a mouthful, I walked out of there with the name engrained in my brain ... apparently until this moment when I had to refresh my memory.

The diagnosis opened our world to amazing relationships through our PIGN family. We've met families across the country, shared tears and celebrated successes together. We've developed friendships with incredibly caring, accepting people from myTEAM Triumph. Either of these alone is life changing. 

Diagnosis Day 2015: So Little, So Cute

My goodness, he was so little. He was also so darn cute. This is when he thought he was worthy of being the doctor. This was also minutes before our lives changed. 

When we got his diagnosis, we were told he was the 15th in the world. It was overwhelming. That's why we have so much empathy for new families who are diagnosis. It may be 8 years, but we still remember exactly how it felt. 

We left that appointment with more questions than answers. We wouldn't even tell our families the name of the disorder because we didn't want them searching to find the 2 or 3 things that existed on Google. The reason for that is we didn't want them to see the life expectancy of 3 years when our son was already 2.5 years old. 

It took months to come to terms with this diagnosis. Honestly, it's still a journey because life with Teddy is a roller coaster. There's always going to be moments that bring all the feelings, which means we need to come to grips again and again with different aspects of his diagnosis. 

Diagnosis Day 8 Years Later: Not So Little, Still So Cute

But, hey, it's 8 years later. That 3-year-old life expectancy was blown out of the water (by Teddy and so many others with this diagnosis). We're so grateful for that! He's not so little, though I imagine in 8 years I'll look back at the pictures from today and think, "He was so little!" That passage of time is a blessing for which I'm always grateful. 

The photo from today is when Teddy thought he should have a sleepover with his grandparents. And gosh, he's still so cute! 

Life Keeps Us Busy

Life always seems to be busy, which is why there's some time between posts. Let's see what updates I have from the past several weeks ...

Broken Toe/Foot This healed well, thankfully! He got the all clear to spend some time barefoot at his final checkup. We were advised to have him wear his brace and shoe for most of the time to protect it through November to make sure it's fully healed. This was great news, though, because it allowed us to return to our own bed and allow him to sleep by himself for the first time in 2+ months.

School He loves school. He loves his friends, his teachers, gym, music, recess and pretty much everything about school except following directions or doing what he doesn't feel motivated to do. (Not that atypical for a child, now is it?) He got to venture to a wildlife preserve on a field trip the other week, and he was ecstatic to ride the bus!

Shoes Ugh. Buying shoes that fit over his AFOs is the worst. We've used Billy Shoes for several years, and we initially had really good success with them. But the last year, he's destroyed them almost faster than we can buy them ... certainly faster than we care to buy them. In fact, the last pair we got took less than 3 weeks for holes to be worn into them. We spent more than an hour trying on everything we could find (and suggested by the sales staff) but couldn't find anything traditional that fit over his AFO without looking like clown shoes. We finally ordered Friendly Voyage shoes, and we're optimistic. They seem to be good quality (as I'd hope they'd be for the price), and they fit on his feet like a dream. The only problem is we have to rig up something to ensure the zipper stays up because it tends to work its way open with all the movement Teddy makes, and he's stepped out of the shoe once. 

Halloween Teddy had a great Halloween, making up for missing last year due to COVID. He went to a fun Halloween party his friend hosted at a bouncy house and had a great time. We went to a neighborhood party, and he got to do the limbo and had so much fun, once he got over the different costumes. He went trick or treating as Handyman Hal and loved visiting everyone, plus getting candy. It's interesting because he won't let you carry his bag, and he's not the least bit coordinated, so everything spills everywhere. We resorted to frequently emptying his bag (after every house or two). Oh, he does not care for scary costumes at all. One house had someone dressed up as a decoration who then scared kids, and Teddy was done after that with anything that looked remotely scary or suspicious. 

And the final randomness in this post is that Teddy got a paint your own cookie to decorate (since his mom runs a bakery after all). Here's how it started:

There's already a bite out of it, but he's actually painting.

But within 2 minutes it evolved into this:

No further painting was done. Only eating.

Sedation Dentistry

If you recall, Teddy's first Monday without school this summer was a hit. Literally. As in he hit his face on a curb and chipped out his 2 front teeth. 

That resulted in a trip to our regular dentist, followed by another visit a month later when the swelling was gone to attempt to repair them with laughing gas. The idea that would work is downright laughable, so we ended up with a referral to a pediatric dentist who does sedation dentistry. That visit last month led to Teddy being scheduled for dental surgery today.

Dave will not let me change his name to Theodork.

Sedation dentistry is the only way we'll get this work done, and everyone seems to feel like it's the best way for him. Tell him that as we have to check in, go through all the questions and then try to get him to actually sit on the bed ... all while he is asking to leave and getting more and more agitated. The team asked if we could get him on the bed, which obviously we can because there's 2 of us and one of him, and we're still stronger. But I'm sure it was a bit comical because he acted like he was superglued into his chair and then proceeded to wriggle like the bed was electrified to get off it. So, yeah, that was not pleasant for any of us. 

That's when they realized he needs something different, which I thought I had already covered with them that he wasn't going to settle down until they started knocking him out. They asked about one of us going back with him because they thought that would be less traumatic than ketamine. False. It's far easier to give him one shot that forces his body to relax and allows us to settle him on the bed, so they can wheel him back and put him fully to sleep. 

Once we explained that, he got the shot and crawled back in his chair. Then I carried him to the bed, where he fought for one or two more minutes before the medicine hit his system, forcing him to relax. While it's unpleasant to see him like that, at the same time we know it causes the least trauma because we just need to get this over with as no amount of soothing is actually soothing to him.

So now he's back getting his front teeth capped, his back molars sealed, a thorough cleaning and x-rays done to make sure there's nothing else to address while he's snoozing. Then we'll see whether he's tired the rest of the day or whether he's back to his usual energy level of non-stop movement.

 And hopefully it's another 10 years before we need sedation dentistry again, though I know that's too much to dream. 

Chomp, Chomp, Chomp

Teddy's been in the school system for 7 years now, and this is the first year that he has a child who bites in his classroom. Given that Teddy's in a self-contained classroom, which means he's in a classroom with other high-need students who aren't in mainstream classrooms, it's not surprising that his classroom looks a bit different than other classrooms. It's not uncommon to have different behaviors (like Teddy's flop and drop or food stealing) like yelling, occasional hitting, clothes that leave the body and more. But most of those, aside from the hitting, don't actually cause harm to others. 

Teddy's been bitten 4 times in the first 3 weeks of school. He's become the main target because he has no personal space boundaries and doesn't realize other people have boundaries. The worst was getting the call last week Monday that he was bit again while he still had a giant bruise on his other arm from Friday's bite. So I spent much of my time during his therapy and at night laying with him while he fell asleep e-mailing and trying to advocate for additional resources. 

One of the latest bite marks.

Believe me when I say I'm fully supportive of his teacher and the small team that works in his classroom daily. In addition to trying to educate our children, they're also spending all their time redirecting and modeling appropriate social behaviors, not to mention trying to curb negative behaviors and ensure safety. It's almost laughable some of the suggestions that others in administration suggest for solutions. OK, I'll be honest, I might have chuckled and asked if they've actually spent time in Teddy's classroom. I was kidding, but I also realize that what might work well for many kids likely may not be the best interventions for kindergarten students with significant behavioral challenges. 

After e-mailing quite a few folks, and several discussions with his teacher, it sounds like they are pulling in a variety of resources to hopefully resolve the behaviors quickly to ensure safety in the classroom.

But I also firmly believe the underlying issue is inadequate staffing. I reached out to the Director of Special Education at the start of the school year when I realized there were 7 students in Teddy's classroom with only one teacher and 2 paraprofessionals. (We've advocated since early on to have 1:1 staffing for Teddy due to safety reasons, not to mention to meet his learning needs, and we've never made any headway with that.) To compensate for being short staffed with high-need kids, the best solution at the start of school was to place a practicum student in the classroom who's there about 50% of the time to be an extra body. At the start of school, the district was short 20 para-professionals, with at least one of those open roles in Teddy's classroom.

I don't know how many para roles are still open, but the one in Teddy's classroom still is, along with others in his school I believe. These roles are critical to students' success and safety. Right now it's next to impossible to hire people for roles like paras because there is such low unemployment in Wisconsin that gas stations and other entry-level roles can pay as much or more as caregiving roles and paraprofessional roles. Everywhere you go, you see now hiring signs. Seriously, I just did a search on career postings, and a gas station is starting at $15/hour and the Oshkosh School District paraprofessional role is posted at $15.48. 

So I've been advocating and reaching out to others in the district to see what is being done beyond the standard recruitment for these roles. I truly believe that unless they make changes to overall compensation that they will not fill these roles that are so critical in keeping our students safe and helping our students learn. Thus far I've learned that a comprehensive review of each paraprofessional job description is being done starting next month to evaluate roles, responsibilities and compensation. That's a starting point, but we need to do better as a community. We're failing all of our students when we can't fill these and other critical roles. 

It Took 10 Years ...

... but Teddy finally has his first broken bone. At least, the first one we've realized was broken because honestly, only God knows how many concussions he's had and if anything else ever was broken. I mean, there was the time we were certain he broke his nose, but that was just a ruptured cyst that resulted in a couple intense surgeries and some quality time with a good ENT doctor. 

Anyways, back to the current situation. A week ago Teddy was trying to load a 4x4 wooden post into the back of a UTV (think about as high as his head) when he dropped it on his bare foot. Dave carried him into the house screaming (Teddy, not Dave). He's not a big fan of ice packs (or bandaids), but we tried to apply ice, gave him Ibuprofen and snuggled him while we ate supper. He was still crying after supper, which meant it really hurt, so we headed to the walk-in clinic to get it checked. They did x-rays just in case, which went much smoother than I expected. Results were expected the next day due to the holiday.

The next morning he was limping, but he was walking on it (mostly walking on the side of his foot). So we knew it still hurt, but we figured it was just bruised. Nope, turns out the kid was walking on a fractured toe/foot. I say foot because the break is higher up in the toe bone, so it's what you'd consider the top of your foot in non-medical terms. The walk-in nurse who called with the results said to ice it (which he won't tolerate) and keep him non-weight bearing until he saw orthopedics. I believe I kindly informed her that without sedatives, there was no way to keep him from being weight bearing.

So the next day we sent him to school with a detailed note and his chair, noting that he'd still be walking and moving because we know Teddy but to please try to limit his activity and use his chair. We finally got his ortho visit scheduled for Friday (so 5 days after the incident) and confirmed with his primary care doctor that we could and should try to use the boot we borrowed from a neighbor. Up until that visit, while we tried to limit his activity as much as we could, he still proved he could walk, run and jump with a fractured toe. 

Fractured toe is not enough to slow down Teddy.

The irony is not lost on me that my last blog post was about saying farewell to our backpack carrier because less than 2 weeks later we had a child who was supposed to be not weight bearing. We used his 2 chairs that we have (one for transports at school and the bulkier fun chair at home before/after the bus). We put a trike in the house to encourage him to ride it rather than walk. And we carried him up the stairs every night and encouraged him to butt scoot down the stairs. So, the child carrier still would have been handy for the next 5 weeks in other words.

Ortho believes it's not completely broken all the way through and wants to have follow-up x-rays again in a week to be certain nothing's out of place. We discussed a cast but determined the boot or his AFO/shoe is sufficient, but he's not to bear any weight without that additional support. That means he's even supposed to wear it at night, which seems so darn miserable.

He's tolerating the boot really well, except for when he gets home from school and just wants it off. As long as he stays busy, he'll leave it alone. We also have tape to wrap it if needed, so he can't just remove the boot. Because we can't stand the thought of wearing the boot non-stop (and it does rub on his leg just because he never stops moving), Dave has been sleeping with him at night. That way we can forego the boot and just put it on right away when he wakes up before he starts moving around. 

It's still going to be a long 6 weeks (hopefully only that if all heals as expected), but at least we have one week done!

The End of an Era

As the years have progressed, we've used our backpack carrier less and less. That's understandable as Teddy has grown. Physically, he's now close to 4 feet tall and weighs 80 pounds. When I'm only 5 feet 2 inches on a tall day, there's not much height difference between us. He's also grown steadier and stronger in his walking, though his ability to listen hasn't grown in equal proportions unfortunately. 

For the past several years, each time I pulled out the carrier I was reprimanded by my loving husband and mother ... truly from a place of love and concern that I'd injure myself by carrying Teddy. I insisted on bringing the carrier last year on vacation (and used it on one hike for just a short stint when the listening ears and all other attempts failed). When I didn't pack it for vacation this year, I knew it was time to pass it along to another family in need.

We had to do one final "ups" before mailing the carrier. He still fits. ;-)

Since it was hard for me to give up this season of life, I wanted to give it to another PIGN-CDG family who could benefit. As I type this, our carrier is on its way to Colorado where I hope it brings a sweet 4-year-old boy and his family as much as it did for our family.

Look at that toothless grin! We loved exploring together!

This carrier (and its predecessors) allowed us to get through the basics of life. It made grocery shopping possible when I needed my hands free. It made shopping trips possible when I couldn't wrestle Teddy into carts anymore due to his size, especially combined with my height. (There may have been a couple times we upended the shopping cart when I was trying to wrestle Teddy out by myself.) It allowed Teddy the snuggles and closeness he needed when he was in a mood and needed all the extra love ... yet I couldn't just hold 60+ pounds of sad Teddy.

We did plenty of hiking at our land with the carrier. Ted had to take an important call.

Beyond making the ordinary moments easier (or simply possible), this carrier traveled the country with us. I'm pretty sure this carrier has visited more national parks than many Americans. So, I couldn't resist searching back in time and sharing a handful of places we've been and memories we've made with this carrier. I'll be forever grateful for what this carrier gave our family.

You couldn't always see Teddy in the selfies, but you can see Black Canyon of the Gunnison.

It's completely safe. He's strapped to my back at Olympic National Park.

This was when Teddy still had pacifiers attached to the carrier at Rocky Mountain National Park.

Again, perfectly safe to walk up a river with a child strapped to your back. 

No way we trusted Teddy around the ancient ruins at Mesa Verde.

Not pictured are the ladders we climbed to get to this view in Canyonlands.

Sometimes I even let Dave carry Ted, like here in Great Sand Dunes.

Respite

Last week we had the opportunity to enjoy a bit of respite in the form of a backpacking trip with only AJ for a couple days to Pictured Rocks in Michigan. This trip is an annual tradition for us, with this being the 6th time we've went in the past 7 years (darn you COVID in 2020!). 

It's incredible to watch AJ transform on these short trips as we all truly relax and enjoy life without the daily stress and challenges that come with living with Teddy. A highlight this year was watching AJ create a lounge chair out of sandstone slabs propped in the middle of the river. He spent probably close to 2 hours creating this masterpiece and relaxing in it, knowing there would be no guarantee the waters wouldn't claim it overnight. (It did survive until morning, so he got one more relaxation break there!)

Hiking and camping are my happy places. We have so many family memories that I cherish, but hiking and camping are difficult to near impossible with Teddy through the years. That's why this trip is so incredibly special because we get to do things we love without being fully responsible for care 24/7. 

We're grateful for our village, particularly our one sitter who has spent lots of quality time with Teddy including mornings far earlier than she enjoys, to make this respite possible.

I can't help but share some of my favorite photos from the trip. And we're already looking forward to next year!

All set to hike in to our campsite!

I'm not sure how many more years we can all squeeze in one hammock.

AJ is relaxing in his chair.

We hiked to Spray Falls with AJ, first time since he was 11 months old!

This is my happy place.

Best Brother Ever

It takes a village to raise Teddy, and he's so lucky to have his brother AJ in his village!

AJ is the most empathetic, kindest, thoughtful kid I could imagine. When we started fundraising for drug repurposing for CDG-PIGN, AJ wanted to help. 

He developed a fundraiser with an online order form to sell 3-D printed fidgets with all money going to the fundraiser. He/we cover printing costs and donate his time to make them. He did well with that and decided to take advantage of my connection with the farmer's market to sell them at a couple markets.

He did 2 farmer's markets this summer, raising almost $800 and a lot of awareness. He did a fantastic job making his display board, and his dad helped create a really awesome board to display the fidgets. It was a great learning experience for him 

The real magic was listening to him interact at the market. He's incredible talking to people and explaining his mission. We're so proud of him.

AJ works markets like a pro.

Teddy may not realize how lucky he is to have AJ as his brother, but he does know how much AJ loves him. 

Running & Relaxing

Let me preface this by saying there is very little relaxing about running when it's 90 degrees pushing 90 pounds. 

But it is relaxing for Teddy to be pushed, especially along the riverfront where there is an endless stream of boats. We also detoured to the train bridge and got to watch a train go past, and then walked an extra half mile at the end to avoid the mean seagull that was dive bombing us and almost pooped on Teddy. Jerk pigeon. 

 Teddy had a rough listening day and ended up with hurt feelings, timeouts and not nearly the fun he could have enjoyed. So I took advantage of a group run with Running Water City to change his mood and ensure we both had some form of fun tonight. Again, it's a twisted version of fun for me, but it was worth it to allow him to enjoy the time out and about and for both of us to enjoy the patio at the brewery afterward. 

Fifth Ward is my favorite brewery, and I actually got to sit for about 15 minutes at the table while Teddy chilled with his popcorn until he decided the couch looked like a better seat. He tried to invite my friends to join him, but they couldn't "hear" him looking at them and pointing at the couch. So he had to go back (after about 5-10 minutes of trying) and physically show them what he wanted.

Someone was very happy to be at the table with his popcorn.

Thank goodness for friends who enjoy Teddy's company, who rebuckle him in his chair, who grab popcorn for me, who walk back to our vehicle with us and buckle him in and just make it as easy as it can be to enjoy a post-run beer with Teddy.

Happy 10th Birthday!

Happy birthday Teddy! 

While I'd love to write a beautiful blog post, I'm exhausted. So here's a recent photo of the birthday boy, and I'll reminisce another day.

That smile. 

Vacations

Since we got married, we have spent our vacations camping. While we’ve done nights in hotels, as the years progressed more of our nights were spent in our tent. Even as we added AJ to the mix, we continued with a trek into the backcountry (camping remotely where you hike in with all your belongings). When Teddy joined our family, we knew backcountry wouldn’t be feasible at least for few years until the kids could hike in themselves (hahaha … if only we knew with Teddy), but we continued with our camping adventures. In fact, the year Teddy turned one, he did so in Crater Lake National Park on our longest adventure with 3 full weeks of camping and exploring our national parks.

But each year Teddy got older, it got harder to enjoy vacations. Sleep has always been a struggle for him, especially when we aren’t at home. We’ve had vacations where he’s been up for the day at 2 a.m. or 4 a.m. or wouldn’t fall asleep until he screamed himself to sleep for several hours finally at 11 p.m. Not pleasant for any of us, and really tired parents don’t make for the best travel companions.

Our vacation 5 years ago nearly broke us … we came extremely close to turning around and coming home after the first 2 days. That’s when Dave decided we needed land where we could all enjoy nature, where Teddy could learn to sleep and we could actually enjoy ourselves and relax. That’s what led to our beautiful piece of heaven on earth, for which we’re extremely grateful.

That coincided with the global pandemic that shut down the world in 2020, and we continued to live in a bubble through 2021 and the first half of 2022. When we decided to adventure on vacation in 2022, we brought reinforcements: one of our beloved childcare providers aka adopted daughters. And we decided then that vacations should always include an extra set of hands.

Our adopted daughter was in charge of the selfie family photos.

So we headed on a short vacation at the end of June to Duluth, MN and the surrounding areas with our other adopted daughter, Sigrid. We spent the entire time in the same hotel, which helps Teddy adjust for sleeping, and did day trips to surrounding national parks (Apostle Islands, Voyageurs and Grand Portage), waterfalls and Canada.

The entire family for this vacation!

Our trip was very different than our trips of the past with all our time in a hotel and much less time in our parks, but we got to explore places in different ways. We did a train ride from Duluth, and Teddy was oh so excited because trains are one of the coolest things in the world.

He loved the boat rides!

We also did 2 different boat rides. The first was to Kettle Falls in Voyageur, and Teddy adored that board ride on the smaller boat. He even managed to keep his cool when we were stranded right by the dock for an extra 30 minutes riding out a storm. The second was the Apostle Islands Grand Tour. We intentionally waited to make sure the first boat ride went well before we committed to the second set of boat tickets. While Teddy was far more squirrely on the bigger boat, we managed to enjoy the scenery and the tour (and were quite glad we brought his chair to help him settle down. OK, fine, he got put in there in time out several times because playing on the stairs on a boat is not cool.)

This is why we need extra hands.

Our trip to Canada included several beautiful waterfalls and an adventure into Walmart to stock up on Canadian candy (and ketchup chips to try). We also had to find maple donuts for AJ’s cravings—that’s what he wanted most on this vacation.

While it was different than our trips of the past, it was a fantastic vacation filled with family time, happy memories, natural beauty, history and most of our sanity.

This is the best picture of vacation.

Grateful for Graceful Wakes

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.

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.

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.

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.

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.