A Hiking We Will Go!

Ya'll, life does not slow down. It's about to get extra crazy here, so I wanted to share a quick update since we got our Huckleberry adaptive hiking cart. 

If you've followed our journey for a while, you've seen me post multiple times about hiking because it's a key part of our vacations and our life. While we don't get to hike as much as we'd like with kids (and Teddy in particular), hiking has allowed us to explore so many incredible things. You can read out our hiking adventures ... at least some of them ... here. And you can read the bittersweet end to hiking while carrying Teddy here. 

We truly thought that was the end of our hiking journey with Teddy, unless we could take his adaptive chair on a particular trail. Then we discovered the Huckleberry available for pre-order this spring and ordered one within a week! (A huge thank you to our generous family member who helped sponsor Teddy's Huckleberry!) 

Teddy's Huckleberry arrived in the last couple weeks, and we've taken it for spins around the yard and two actual hikes. It was definitely a learning curve for all of us, as Teddy was pretty skittish and uncertain about riding in it at first, but he's now more than willing to clamber on for a ride. 

Amazing friends help pull (and stabilize) your child!

Yesterday two of my amazing friends joined me for a hike with Teddy, and we had a great time. I'm thankful for strong friends to lend helping hands who love Teddy and have a sense of adventure because we certainly needed it for part of the trail as you can see in the video.

We're looking forward to many more hikes and adventures with this!

A beautiful scenic overlook (up the side of a Wisconsin mountain).

Happy Birthday Buddy!

How is it possible that my little guy is 11?!? 

He's not so little any more ...

Teddy's birthday is often a mix of emotions:

• Gratitude to have another year with Teddy. When we got his diagnosis at 2.5 years old, we read the life expectancy was 3 years old. Given that there are only about 100 known cases of PIGN-CDG in the world, we know far too many families who've buried their children from this diagnosis. Yet Teddy and others continue to thrive and write their own stories.  
• Sadness that comes with comparison. In the words of Teddy's namesake, "Comparison is the thief of joy." Some years it's easy to get lost in the rabbit hole of what Teddy can't do compared to others his age. It's especially easy when shopping for gifts is hard.
• Happiness of the celebration with family and friends. The best thing for Teddy isn't presents, but rather the presence of his favorite people.

This year was extra chaotic because I had a farmer's market the morning of his birthday, so this year didn't come with quite so many emotions. I lived in the land of happiness and gratitude, loving seeing him so happy as he spent his afternoon and evening with his favorite people.

Birthday buddies - Teddy & Collin got to celebrate their birthdays together last week.

We invited family, neighbors and friends, and so many of them made an appearance (whether that was for Teddy or the pulled pork is debatable). I snuck him away for a quick visit for his sitter's graduation party, and he was overwhelmed when we returned home because so many of his favorites were here that he couldn't decide who to play with first! 

We're so blessed to have Teddy as our son and blessed beyond measure to have the community that surrounds and loves on him!

Summer Sickness

 It's weird how things work out sometimes. 

On the Wednesday before July 4th, I was a bit concerned dropping Teddy off at therapy because I was afraid he was coming down with pink eye. He had been rubbing his eye for 20 minutes, clearly in pain, before leaving for therapy. But it seemed to be an eyelash in his eye and then a pair of styes, so I felt it was OK to drop him at therapy.

When his sitter picked him up from therapy, he was definitely not acting like himself, just moping around, trying to take off his shorts and diapers and pointing to his waist. (On the bright side, the eye issue was resolved.) Since he's not verbal, it's really tough to tell what's going on. I was working from home, so I could check his temp and check him out.

He seemed OK from a symptom standpoint that I could find, but something was clearly bugging him. After about 2 hours from when he started acting weird, the mystery was solved when he threw up. Ugh. He threw up twice, which confirmed my gut feeling that we should take him into the clinic.

We had a bit of a poop issue, and then all of the sudden he started scratching. The poor kiddo just turned bright red from head to toe with viral hives. No break for him!

So a quick trip to the walk-in revealed not just the obvious stomach bug, but also a nasty ear infection and then viral hives to boot. Poor kiddo had a 3 for 1 special. But, without the stomach bug (which probably prompted the viral hives), we wouldn't have known about the ear infection to treat that. So in a weird way, it all worked out ...

After a night of medicine (anti-nausea that didn't fully work as he puked up all his medicines, prompting a call to his neurologist on call to sort that out), a long oatmeal bath and some sleep, he woke up feeling much better with the stomach bug thankfully over, along with the nasty hives. 

It wasn't quite the 4th we had planned, but we did manage to get to our land to play in the mud. At least that was Teddy's plan.

Just a bit of mud.

Teddy goes to Camp

Yep, you read that correctly. And if you've ever watched the movie Ernest Goes to Camp, I'm pretty sure there were just as many adventures, just different kinds. We can only imagine how the week went exactly because we dropped him off Sunday afternoon ... heard nothing all week ... and picked him up this morning. 

No news is good news when your child is at camp, though it leaves quite a bit to the imagination. But we felt as comfortable as possible in leaving our non-speaking, adventurous, thrill-seeking child who likes to test boundaries and explore without limitations who takes a whole regimen of medications (mostly for seizures and sleep challenges) could be. 

Seriously, this camp through Easter Seals is specifically designed for campers (both kids and adults) with disabilities to enjoy a full camp experience tailored to their needs. The application for camp was incredibly thorough, and then there were countless forms to complete after he was accepted to camp. We even had to do temp checks the week prior to camp in an effort to prevent any illnesses from coming into camp. 

Upon arrival, we were greeted by a flurry of smiling staff and had the 3 counselors assigned to Teddy come greet us and walk us through the check-in process. (He wasn't staffed 3:1, but he got their full attention until another one of their campers arrived. There were 3 counselors assigned to Teddy and 2 other boys, so he had plenty of support and supervision.) Check in included another temp check and quick medical screening, meeting with counselors, spending time with an on-site nurse to review his medications and medical needs one more time and then finally hauling his gear to his cabin. Oh, and I signed a waiver to allow him to do a ropes course ... just in case. (Turns out he just wanted to watch the others and didn't want to join in the fun.)

Teddy was teaching his counselor how to play piano during check in.

And because we weren't sure what to expect, we brought all the gear. Loads of diapers (apparently 2 more packages than needed), extra clothes, his chair in case they needed to travel long distances or go for late-night walks to calm down for bed and 2 bean bags just in case they were needed as landing pads for his bed. We were told upon arrival that they could place his mattress on the floor as well. We lost one of his crocs on the way to unload his belongings, but someone found it before we left, so all was well.

(Fun fact: When we picked him up today, he was missing 2 chewy necklaces and a chewy toy. But he inherited a fake plastic mustache (weird!), a pair of shorts 2 sizes 2 small and a pair of socks. I can only imagine trying to keep everything straight when the campers can't do it themselves or voice whose belongings are theirs, even with everything labeled! Heck, I know what it's like with lost and found at a traditional camp!)

Before we left, the camp director came to us and said, "I know I've only known Teddy 10 minutes, but I already love him! He's so much fun!" And then she proceeded to show us a selfie of them. We heard pretty much the same report when we picked him up today, hearing about his smiles, giggles and his ticklish nature. 

While it was weird to have Teddy at camp, we tried to make the most of it with a few meals out, a couple nights camping, some hiking and biking, a waterpark visit and time at our land relaxing, reading and working on projects. AJ commented on how weird we were (especially me), but I told him this was simply us less stressed. It was such a wonderful week for us with memories made. 

We hiked to Devil's Door at Devil's Lake, definitely not a Teddy-friendly hike!

As for Teddy, we won't know the full extent of his adventures. But I know he had so much fun and was so tired from his adventures each day that sleep wasn't an issue! He got to go swimming, play on playgrounds, eat s'mores, dance party fun and field trips that included tractor/wagon rides. His counselor said he had a great week, and the camp director showed us a bike that he commandeered (that she has no clue how it got on camp grounds) and had a blast riding. 

We're all so glad for this experience and looking forward to next year! (Even if it was a really rough return home because he's extra tired, and we're all feeling all the emotions of coming back from camp ... it's just so much fun it's hard to leave and adjust to real life again.)

Final Days of Fifth Grade

Franklin Elementary School has been home to Teddy for the past 6 years. After spending his 3K and 4K years at two different schools, we were excited to settle into Franklin Elementary School for the foreseeable future. Though I was disappointed at the time (OK, I recall sobbing hysterically) to learn that Teddy wouldn't be at the same school as his older brother, Teddy was meant for Franklin.

This little guy started kindergarten wrapped in love and support.

As I searched back in time to find pictures of the early years, I was reminded of so many memories and milestones. Though I'm sure I'll miss some important events or notes, here's some of the highlights:

1. Teddy's first field trip (and all the subsequent ones). His kindergarten teacher set the bar high for inclusion, and I loved witnessing Teddy with his friends. (I also loved when I realized the school would send paraprofessionals with Teddy, so I didn't have to chaperone every field trip. Sorry not sorry for letting them attend plays with Teddy instead of me!)
2. Birthday party invitations and the chance to hang out with friends outside of school. Teddy made his first close friend on the bus, followed by others. Now Teddy's friend Brad is his only friend who will be at his new middle school. The two of them are wonderful friends, and it's so fun to see them hang out together.
3. The power of advocacy. I witnessed that in his kindergarten year when I shared my feelings on this blog, only to have them read by others in the school and then I heard from the principal. I learned valuable lessons about channeling my advocacy first to the appropriate channels and then determining how much I shared here. But I did learn that asking and advocating will open doors like the next one.
4. Teddy's first concert. He wasn't included his kindergarten year, so we engaged his team to make sure he was included every other year. In fact, he even played the ukelele at his final concert this year!
5. Elopement. This experience was surreal (particularly the circumstances unfolding when I heard firsthand what happened the next day) and is irrefutable proof that Teddy has a whole team of guardian angels (who apparently all took a break at the same moment). We got darn lucky this day, and I don't think it's something his team will ever forget. While it still didn't get 1:1 support for Teddy, it did put in place 1:1 support when outside of the school building in a safety plan. Though that safety plan never got tested fully right away because ...
6. A global pandemic shut down all schools for the remainder of the school year. And then we did a modified school year for two entire school years. (Holy cow ... I can't believe we lasted 2 years with that child in a bubble to protect him.) His teacher wore full PPE for that first year (mask, gown, gloves and face shield ... which is just insane to consider now but was so appreciated at the time.
7. A paraprofessional who asked in January or February 2020 whether we ever would be interested in childcare for Teddy, and I answered yes before she finished her question. Because of the global pandemic, she actually stepped in sooner than intended for childcare, moved in with us for a period of time, spent holidays in quarantine with us and became a part of our family. It's weird to know that this wouldn't be the case if Teddy went to any other school.
8. Beautiful art projects, including some of my favorite Christmas ornaments and homemade gifts. It's so wonderful that his team helps him to create these little masterpieces because he is truly proud of the work he brings home. 
9. Fantastic bus drivers and aides. We've made a lifelong friend who commandeered a bus to bring to Teddy during the COVID years to give him his bus fix. These ladies have always watched out for Teddy, and I've always rested easy when Teddy was in their care.
10. A DARE and 5th grade graduation ceremony where he scampered up to get his DARE certificate ... and then tried to run away in the opposite direction. After a break from sitting (riding on his chariot of a bike), he came back for the 5th grade promotion. Yet he was very particular about the magnetic toys and organizing them back in the box, so his teacher had to physically redirect him to get his certificate. Yet afterward, his teacher commented twice on how good Teddy did. Not only did that make me chuckle, it also makes me wonder what most school days look like.

Now he's a big 5th grader celebrating graduation with his amazing teacher.

This school has been home to Teddy for 6 years. While we're so excited for the opportunities in middle school and think it'll be amazing for him, it's bittersweet to say goodbye to Franklin Elementary. As I mentioned above, only one of his classmates will be joining him at his new middle school (the downfall of not being placed at our home school that feeds into our home middle school). This is one of the bitter parts because all the kids at Franklin, every grade, know Teddy by name, and most are excited to see him. I watched the kids at graduation cheer extra loud and give extra high fives to the kids like Teddy and the ones who need a bit more love (like the little boy who immigrated this year from Africa knowing no English ... funny story, Teddy's universal language of gestures and smiles convinced this kid to join him on the carpet when everyone was supposed to be sitting at their desks ... still makes me chuckle.)

This week will be a hard one for me, as mom, to let go of the elementary years. Right now it's less about the uncertainty of middle school and more about the sadness of leaving behind the friends, teachers and support staff who have embraced Teddy fully for who he is, helped him be his best and loved him (most moments at least when he wasn't testing those boundaries). 

Happy World CDG Day!

Happy World CDG Day! Today is a day to celebrate (aka raise awareness) of Congenital Disorders of Glycosylation. There are more than 160 different types of CDG, and Teddy is affected by PIGN-CDG. PIGN is extremely rare, as we were told it appeared Teddy was the 15th in the entire world when we got his diagnosis in 2015. We now know of approximately 100 cases of PIGN-CDG between research and our global PIGN community, which feels like so many compared to the handful of other families we first met virtually in January 2016.  

An oldie, but goodie for World CDG Day!

Today is about raising awareness. AJ, Teddy's older brother, is doing his part in presenting at his school. He's done this every year since kindergarten, at first with me leading the way and then him creating and sharing more and more each year. In fact, this is the first year I think he's flying solo for his presentations because I'll be at a conference presenting about building your community and connecting with others when your child has a unique diagnosis. AJ does a phenomenal job with his presentations, and he also manages to tie in his fundraiser where he's 3-D printing fidgets and dragons for research. If you're interested in ordering from him to support his fundraising, you can click here.  

Speaking of fundraising, I'll put in a shameless plug for our overall fundraising effort. We, as a collection of PIGN-CDG families, are working with scientists, doctors and researchers to research potential treatment options for PIGN-CDG. The current approach is drug repurposing, which evaluates thousands of known compounds (including medications, supplements and other compounds) to see if any of them may potentially benefit PIGN-CDG. This is expensive and time-consuming research, and it's all being funded by donations and fundraising as 100 people in the world doesn't tend to pull in the interest from big pharma. The progress we're making is exciting, with a handful of compounds that show promise to test on skin cells. Teddy provided a biopsy last year, so that his cells and specific mutation may be included in this testing phase. (Fun fact, of the 100 families with PIGN, very few are affected by the exact same mutation ... many of our kids have unique mutations that impact their overall functioning.) If you're interested in helping to fund this important science, you can donate here. 

If you're wondering why you'd want to donate, simply watch the video at the end of this post. This video represents a large number of the individuals affected with PIGN-CDG. You'll notice little doves by some names. Those are the sweet souls who we've lost, as this disorder takes our children from many of our families far too soon. 

Now, if you're still reading and wondering what in the world CDG is, I'll give you the cliff notes version. It is not Cute, Daring and Goofy, though that is what sometimes I feel is true for Teddy. Congenital means it exists from birth. This is a lifelong, genetic condition. Disorder seems to be pretty obvious, meaning that something doesn't function as intended. Glycosylation is the tricky part of this diagnosis, both to say, understand and do (for those affected). Glycosylation is how the body processes sugars on the molecular level. This has nothing to do with eating sugar but rather the building blocks of cells and how cells process those building blocks. Essentially if you think of each cell as a mini factory, there's a defect in the assembly line and the sugar block can't be added to the protein chains. These chains are what help our bodies do every function, which is why CDG-PIGN affects someone on every level. This site does a much better job of explaining glycosylation than my jumble of metaphors. 

So, there's my bit of education, awareness and fundraising for World CDG Day! Now enjoy the sweet, smiling faces of PIGN that bring so much joy into this world! (I'll try to get the video directly embedded in this post, but for now, here's the link to the reel.

Intentional Learning

Whew, life is busy. 

So, it feels good to spend some intentional time learning and leaning into how we can best support Teddy. This intentional time makes life even busier, but it's a worthwhile way to spend our time.

This month we started parent training through a local organization. Parent training is a component of Applied Behavioral Analysis (ABA) training, and it can also be a standalone component. Although we're on the waitlist for actual therapy services, this gives us 1 hour a week to learn about ABA components and start practicing some of the techniques. I love that we're doing it in our home with Teddy present, so we can brainstorm on specific situations. What we've found to be helpful, in and of itself, is simply taking an hour each week to talk through situations and collaborate on how we could handle things differently to better support Teddy. 

So often, in the moment with high emotions, it's a matter of just surviving that moment and getting through the to-do list for the day. This intentionality and collaboration with both parents and a trained therapist helps us slow down to do better. We know none of this will chance anything overnight, but we're getting ideas and hopefully will see progress over time. (Heck, I've had 3 days where Teddy has come inside after school without flopping on the ground in the past week!)

Now I'm at day 2 of a 3-day statewide Autism conference. I'm a learner by nature, and this is a great way for me to embrace this new diagnosis for Teddy. It's refreshing in a unique way to attend this conference because some of the social norms don't exist here. In fact, this was the start of the conference for me:

This is brilliant!

Seriously, I think every conference should have these stickers. Let's be real. I'd probably be yellow at some conferences. I've seen people doing the things they enjoy that help them focus (like building Legos) during sessions. There's more fidgets (or focus toys depending on your viewpoint) than you can imagine. There's so many helpful vendors here in the exhibition hall to learn about amazing things, even if they don't apply to Teddy. 

It's a lot of information to process, but I'm grateful for the opportunity to pause and invest in learning.