Merry Christmas from Wisconsin!

I hope your Christmas was filled with peace, joy and a bit less excitement than ours. Our day started with a 5:30 alarm (because apparently AJ was afraid he wouldn't wake up Christmas morning). That woke him up, along with us because he was sleeping in our room due to his aunt, uncle and their  puppies in his room. We heard Teddy stirring, so we decided to bring him to our room for family snuggles until 6 a.m. when we'd go downstairs to check to see if Santa came. 

Teddy was so excited to come into our room so early that he somehow stepped in a basket (that isn't anywhere in the walking path) and cracked his chin on our dresser, knocking down several things with a clatter that accompanied his cries. We saw quickly that he was dripping blood, unfortunately from his chin. That's a tough area to get to stop bleeding, especially when he wouldn't let us apply pressure and barely would let us keep dabbing it after the first couple minutes. After just a few minutes he was done crying and wanted to bounce all around our sheets, rolling around with his face on the sheets. Let's just say we got to do a couple loads of blood-stained laundry. 

After a bit, it seemed to stop dripping blood, no thanks to liquid skin which only resulted in protests. A shower seemed to help stem the bleeding and at least get him clean. So we went downstairs to see what Santa brought while debating whether we needed to head to the hospital for stitches.

We had excited kids for opening presents but determined we really did need to take him in for medical treatment. Fortunately urgent care was open with a short wait posted online. (Urgent care is a much quicker process and typically way less traumatic for Teddy as he has really bad memories from the ER.) We had family at our house to hang out with AJ, so we took Teddy in for a Christmas visit to the hospital.

This was before the trauma of treatment started.

The doctor and nurse realized pretty quickly that it did indeed need stitches ... and that applying a bandage with numbing cream wasn't going to work. That sent Teddy into hysterics because he really does not like bandages on him, and I'm sure it felt funny to have it being numbed. So instead they rounded up probably all the doctors and nurses working at 7 a.m. Christmas morning to have a team of 4 people to assist. 

We did a blanket wrap, literally restraining his arms and legs with a blanket and then applying pressure. It took 5 of us holding him while the unlucky doctor put in 4 stitches into a hysterical Teddy. There are few things worse than having your child hysterical (or lifeless after seizures) and being unable to do anything to make it better. 

However, as soon as the stiches were done, Teddy bounced back quickly, smiling as we left the hospital and excited by the time we got home to ring the doorbell and see everyone inside. 

Once we got past that excitement, we had a splendid Christmas. The highlight was seeing my 99-year-old grandfather and making memories with him and the boys. The kids loved their presents, and we even managed a Christmas morning run for some of us. 

Unseasonably warm weather allowed Teddy to join us for our Christmas run. 

We're not too excited we get to start the New Year at urgent care because that's when Teddy's stitches need to come out, but that should be less traumatic for all of us.

Family Photos - Our Family Is Growing!

We did family photos last week. Last year we added Sigrid, and this year we added Bri. We joke that they are our adopted daughters, but the reality is they have become family. Heck, some days, they are our favorite children. ;-) We're so blessed to have these ladies in our lives, caring for our boys and making our lives easier and happier.

Weird how most of our children don't look like each other ...

This would be the best picture if AJ wasn't crying from Teddy head butting him. 

At least our daughters are photogenic. ;-)

Santa at the Zoo

Last weekend we headed to the local zoo with Dave's parents (while he was home recovering from a minor surgery). It was great to see the animals that were out and about, and I think it made me appreciate some animals that normally aren't that interesting to me. We saw huge snowy owls, ducks with funny-looking mohawks and my favorite little monkeys. Teddy really enjoyed those guys!

There happened to be a scavenger hunt searching for monkeys dressed as elves, so AJ had a blast searching for those. In fact, we were nearly done walking through the entire zoo when he said that after we found all the monkeys that we'd have to go back to look at the animals. 

AJ's highlight was getting to see penguins up close and personal. They are one of his favorite animals (along with groundhogs and then cats for domesticated animals). He thought it was pretty cool to see them up close and hear the braying sounds they make. 

So close to his beloved penguins!

Teddy was pretty excited to see Santa. He's gotten braver with Santa through the years. He's always been fascinated by him but on his own terms. He's always so excited to see him that it's hard to get a picture with him looking at the camera rather than Santa. But we got a really good picture with me and the boys and a pretty good picture with the grandparents as well.

I swear I was crouching to hold Teddy. I'm taller than him still.

In Wisconsin, you have to embrace winter and still find the fun things to do to get fresh air. This was a great way!

All smiles, who cares if we're not all looking at the camera?

Life's Been Busy

Sheesh, no wonder why I feel like Christmas is almost here. It's been a hot minute since I last posted here. Life has been busy. Here's a few highlights and ordinary moments in our life:

Both boys are fully vaccinated as of this week! As great as that is, it doesn't really change anything in how we'll act as a family. With extremely high COVID in our area (and, um, world), we still are keeping a very small circle. We're hoping to be able to celebrate Christmas with both our families separately, even though we stayed away at Thanksgiving to avoid unnecessary risk for a couple hours of eating together. (Our Thanksgiving was really nice, even though it was just the 4 of us and rather mellow. We'll take mellow.) Teddy still will continue his adapted education for the time being until the numbers change drastically. 

The boys had a nerf gun battle with their "sister" Bri this past week. I walked upstairs from work and chuckled to see Teddy running around with a gun and his safety glasses. (Safety glasses are mandatory following a nerf bullet to the eye incident.) He thought he was pretty cool.

He was so excited to join the fun!

He thought he was really cool this week when he managed to video call his grandma. None of us are quite sure how the two of them managed that, but Teddy called, she answered and Teddy thought it was the coolest thing ever. 

Notice the pride on his face!

The little things are not so little for us. I love hearing what new adventures Teddy finds with Bri, as long as he's safe. It's great to run upstairs to grab lunch to find them having a dance party, doing crafts or simply making memories being goofy. 

One Small Step Toward Protection

We're sick of COVID. It's changed all aspects of life for us because we now see everything through the lens of risk versus reward as we try to protect Teddy in particular. Once your child has been intubated once, it's not something we ever care to experience again.

Fortunately Teddy was able to get his first dose of the COVID vaccine this week, and even more thankfully he seemed to experience no side effects. We did medicate him with Ibuprofen for a couple days afterward just in case he were to develop a fever (because fevers often trigger seizures for him). 

AJ didn't "throw away his shot!" 

He was very excited to get out of his Kimba Kruze chair to go sit at the table by the nurse. However, when she wiped his arm with the alcohol pad, he realized this was something medical and immediately tried to push her away. I was able to hold his arms and him, so she could administer the vaccine. Teddy did freak out the most when she tried to apply his bandaid, so I snagged it to show him that it wasn't on him. He still was freaking out and looked like he was trying to remove his arm (probably because his brain processed the jab) for just a moment. He immediately went back to his Kruze, which is his safety spot during medical procedures and was then  perfectly fine. 

AJ is normally quite wary of shots, even to the point of working himself to tears before the shot even occurs. However, he was so excited to have this opportunity that he was an absolute champ. He went first, and after his shot, looked at his arm and said, "Oh, you're done? That was just a little pinch." He complained just a bit the next day about a sore arm, but he knows it's well worth it for the added protection for him and our family.

Of course, he also knows that nothing changes now, and nothing will honestly change in December when they are fully vaccinated. COVID cases are incredibly high, and it seems like it's everywhere. We'll still continue to wear masks and avoid activities that are higher risk. Hopefully as more get vaccinated, we'll see the tide turn ...

Peter Pan Tried Flying

Ugh, this kid will be the death of me. Or the death of himself.

Apparently after being Peter Pan for Halloween, Teddy thought he should try flying in real life. He fell over the railing from the second floor or possibly the top of the stairs. He landed with a thud (that's obvious, right?), stunned for about 30 seconds and then started crying without moving. Talk about heart-stopping moments.

Yet within 5 minutes, he was done crying and moving apparently normally. That didn't change the fact that we determined it was best to take him in to get evaluated given his incredibly high pain tolerance and lack of communication. He was excited to go for a car ride with both mom and his babysitter in the middle of the day. He was still excited when we went into the hospital. 

I'll be honest I felt a bit ridiculous telling the receptionist that he fell over the railing for two reasons: the fact that he fell over a railing itself and the fact that he was giggling and appeared perfectly fine. 

(Sidenote: the ER won't tell you whether you should go to urgent care or be seen at the ER. However, urgent care will always take you down the secret passages to the ER when they determine you really needed ER services. When in doubt and not clearly a life-threatening situation, we should always try urgent care first. Of course, this was my third trip down that secret passage ...)

As soon as we went back into the ER, though, Teddy's demeanor changed. And the moment I tried to push his chair into the ER treatment room, he instantly began crying and actively resisting going into the room. We were quite the spectacle with a whole ER team ready to evaluate and treat Teddy, asking me what they can do to help. My response? "The only way he's going in that room is if we force him."

You see, that was the same room where he was intubated. Even though we thought he was out of it, he clearly has traumatic memories. I did manage to get his chair into the room and honestly don't remember whether I had to pull him from him chair or managed to get his chair into the room. (Let's just say we both have some traumatic memories from there.)

They quickly permitted me to have another caregiver present, so we got an extra set of helping hands. And we needed them and then some. I tell you, it was much easier to wrangle Teddy when he was smaller. I'm still larger than him, but he's on path to outgrow me much quicker than I can handle. I'm less concerned about him growing up than I am about not being able to restrain him for medical procedures and wrangle him as needed to get through days like this. 

They decided on a chest x-ray but needed no further tests thankfully. It was challenging enough to get that one done even though it takes about a minute and is completely painless. From the moment Teddy went into the treatment room, he was crying non-stop. At one point, I was concerned he was going to throw up because he was crying to hard ... which would have then indicated a possible concussion when in reality he just hated being there. 

Our nurse was able to get us to a private waiting room with a couple couches, chairs and kid table and chairs. It still took about 15 minutes, but he finally settled down and stopped crying. We rearranged all the furniture repeatedly, sat in everything, ate a snack and enjoyed apple juice. We waited there until they cleared Teddy to be released.

We took off his mask when he was alone in the room and crying ... poor kid.

Although Teddy was unfazed once we left, I know how challenging those visits are physically and emotionally on all of us. I wish that our childcare provider didn't have to endure the hour of crying and the feeling of helplessness when nothing calms Teddy. But I absolutely appreciated her help and calm demeanor as she bear hugged Teddy to get him out of his chair into my lap for the chest x-ray and helped redress him after he had an accident (while I was holding him, of course) and kept Dave updated. 

And in related news, we have renewed our efforts to safety plan the railing. Teddy clearly didn't learn any lessons as he was trying to climb the outside of the stairs the next day ...

Halloween - the Best Therapy

I think it's safe to say that Halloween is Teddy's favorite holiday. Now that he's past the phase of being freaked out by costumed characters, he loves most everything about Halloween. (There was one scary beast character that got the side eye from Teddy.) And I loved watching him experience everything!

I say most everything because he'd really love everything about Halloween if he was allowed to enter everybody's home, traipse into their backyards and explore their garages. Those were the only disappointments for the evening when I redirected him from those activities. 

I was so proud of Teddy this Halloween. That might sound odd because all he had to do was wear a really cute costume and get candy, right? When you think about all the effort and skills that go into trick-or-treating, it's like every therapy rolled into one activity that lasts a couple hours. And Teddy rocked it. 

Wendy with her beloved Peter Pan and his Shadow.

From walking so much (with only a few breaks in his chair to rest) to stepping up to every front porch because everyone has a step I swear, he did so much physical therapy. He only fell once, caught his balance several times and trucked through ditches like nobody's business. 

He knows the sign for candy or treat, so he signed that at many houses, along with thank you. Near the end, folks got more of a wave than signs, but they still knew what he meant. (And Dave looked up how to sign trick or treat, so we now have a year to practice the full sign!) 

Grasping candy in a bowl and taking only a piece or two, much less letting it drop into your own bucket, is monumental from a fine motor standpoint. His therapist would be proud of his release skills as he practiced all night, not to mention when he decided to carry his own bucket.

That was my favorite moment. Even though Teddy was putting candy into his bucket all night, I was carrying it because he was holding my hand part of the time and holding his beloved sword that he was so proud to have. All of the sudden, though, leaving one house, he looked at the bucket 2/3 full of candy and realized he should be carrying it. He threw down his sword and used two hands to pry the bucket from me. From that point forward, I was not permitted to carry the bucket and was relegated to sword duty. He was also extremely concerned when he climbed in the car that his candy bucket wasn't in his arms.

This was the few moments Teddy was actually with the kids. I'm not creeping behind him. Oh wait ...

Teddy is such a social butterfly that going from house to house to see all the people is completely his jam. He honestly thought we were supposed to go inside each house because why else would they open their doors. He did amazing at listening overall, going to each front door, ringing or trying to ring the doorbell and then moving on to the next house. Seriously, taking him trick-or-treating was absolutely amazing this year!

I think we should consider trick-or-treating once a month as therapy. I think Teddy would be on board, but now I need to convince my community. 

Sneak Peak for Halloween

How on earth did this child get to be so big?

The end.

Inclusion by Invitation

One of the positives of having an "adopted daughter" who works at Teddy's school is that we get to hear more about Teddy's school life. His teacher does a great job with communication, but she has some insights that we wouldn't hear otherwise. 

For example, we heard about Teddy's classmate who burst into tears when he saw Teddy's picture because he misses Teddy. That prompted an entire 3rd-grade class discussion about why Teddy wasn't in school right now and how much everyone missed Teddy and wanted him back in the classroom. That was heartwarming to hear.

Then, an invitation to a birthday party came home last week. This is Teddy's second invite to a party. Of course we won't send him because of COVID, but were it not COVID, I'd consider sucking it up to attend with him because I think he'd have such a great time. I know this little boy and his mom somewhat from our interactions, and his mom has an idea of Teddy's abilities, so I'd be comfortable that we wouldn't completely make a scene.

So, this time around, we'll send a present to school with our connection to give to the boy's mom. That way, he'll have something to remember Teddy by until he sees Teddy back at school. (This wasn't the boy who was distraught that Teddy wasn't in school, just as an FYI.)

I love that Teddy's classmates and friends remember him, miss him and want him to rejoin them at school. I want the same ... 

Not Normal Works for Us

For the past 2.5 months, we've had one of our childcare providers living with us. Her lease ended before she landed her teaching job, and she's been on a wait list for an apartment. Since school started, our other childcare provider has been living with us as well during the week. (She has an hour commute, so she stays through the week rather than driving each day.) 

Honestly, it is so much easier to have extra hands around the house. Although they don't spend every waking moment with us (and those waking moments probably happen earlier than they'd like living in the basement with Teddy thumping around upstairs), it's so nice to have an extra set of hands to redirect Teddy at mealtime or to keep him from snatching fresh pain au chocolats when I pull them out of the oven. AJ loves having another person to play games with in the evening, and they both spent virtual time entertaining AJ when he was quarantining while his test results were pending last week. 

Also, given that our social circle is so small with COVID, it's nice to have another person to go for a walk or run or bike ride. Or, since I'll never have daughters, I can even talk them into going to craft stores with me sometimes. 

I know it's a unique living arrangement. It's a little odd that our one "daughter" is a teacher at Teddy's school, and the entire staff knows she's living with Teddy's family. But honestly, it works for us, and it works for them. 

This kept Teddy out of the pain au chocolat while they cooled.

I think we're all going to have a bit of withdrawal when our beloved houseguests move out. We've talked about gradually weaning ourselves, still with some family dinners or treats dropped at school. As much as they might miss the meals and tasty treats (perk of living in a cottage kitchen bakery), we're all going to miss each other's company. We'll start the adjustment period this weekend when one moves out to her new temporary place ...

A Snapshot Series of a Weekend With Teddy

Teddy is running away from me with a fly swatter.

Teddy is running to put wood on the fire, wearing my gloves.

Teddy wanted in on the cornstalk sword fighting that was happening. 

This is the moon. This is how early Teddy wakes up.

At least the sunrises are pretty when they happen an hour later.

This is how I feel about the early wake up calls. 

But he's so cute, and we still love him.

Biking with my Boys

We absolutely love the chairs used by myTEAM Triumph that are made by Adaptive Star. We've used them with the group since Teddy was 2. (He turned 3 by race day, but he had a few practice runs as a 2-year old.) The chairs push wonderfully for running and are so adaptable. It's easier to push Teddy because he's relatively small, but it's feasible to push adults with relative ease. 

Last year we were fortunate to work with Teddy's case worker to get our very own chair that we could use any time for running and biking. That was such a Godsend as it arrived right at the start of the pandemic. Teddy and I ran most weeks last summer, with AJ often tagging along on his bike. We went for family bike rides, and it was safe and enjoyable for everyone. 

Teddy's chair will grow with him for years to come!

The only downside of the chair is that it is so large that it's tough to take it to our land for a weekend with all the rest of the stuff we need. So at the land we haven't had anything beyond his Kimba Kruze, which has served us well. However, he's so tall that he can drag his feet and scoot himself all over the place (or just try to snap his ankles, I swear!). That chair also isn't quite designed for all the adventures we've used it for through the years, so it's a little tough on the trails and rougher terrain at the land.

So Dave ordered a custom-designed chair specifically for the land using our HSA (as it's a medical device for Teddy). This beauty of a chair has bigger tires for easier pushing over rough terrain, an extended carriage underneath to catch all the things Teddy drops (accidently and on purpose) and a higher clearance for going over bumps and hills. 

Let's just say the first weekend we had it at the land we had extreme flooding. So we gave it a thorough test by wandering through the flooded fields that still had standing water, mud and the likes. And it pushed through without getting stuck, so we all got to enjoy the mud while checking out the flooding.  

We've also been able to go for several bike rides, both around our land as well as at a really cool trail that's within an hour of our land. We've been to the Elroy-Sparta bike trail twice, as the boys really love the biking and the old train tunnels. 

Teddy loves the dark, rainy tunnels with all the water dripping.

We need to work with Adaptive Star to adjust it a bit as the wheels rub on the side of the frame, but we're so looking forward to the adventures this chair will allow our family to enjoy!

Amusement Park for All Abilities

Last night we had the opportunity to visit a local amusement park, courtesy of the Green Bay Preble Optimist Club. This was a unique opportunity because the park was closed to the general public. The Optimist Club rented out the park and invited families with a child with a disability to attend. This enabled families to avoid the chaos and commotion that is often too much for families to navigate with their child(ren)'s disabilities. 

It was amazing to see so many wheelchairs (with ride attendants wheeling them right up to the rides to assist), visually impaired individuals and others with visible and invisible disabilities. For one thing, Teddy fits into this environment. He's not different because everyone is different. Second, it was truly heartwarming getting to see the joy that everyone got the opportunity to experience.

Check out the amazing view from the Ferris Wheel.

We've taken our boys to this amusement park in the past, with at least one adult dedicated to Teddy. They even have a disability access pass that we used once, which definitely helped when I was there solo with Teddy. But due to COVID, we've avoided the park the last two seasons because it would be way too people-y for us to be comfortable with Teddy, even outdoors and with masks. However, we knew this evening would be few people since it was limited to families with disabilities. 

Dave was going to be late getting home from work, so unfortunately he was left beyond. No worries, though, because I had plenty of help (with AJ, Sigrid and Bri). We got to enjoy the 8 rides that were open, which included Teddy's two favorites: the train ride and the carousel. There's also a fantastic Ferris wheel with stunning views, especially at dusk. We mildly traumatized Teddy with the drop ride. He was rather quick to run away from that ride and was skittish about getting on the next one. However, he settled down and transitioned back to happy Ted about halfway through the Ferris wheel. 

I will admit the Tilt-o-Whirl followed by the Scrambler had me mighty grateful for additional support. I came way too close to losing my supper. I blame my children because before kids I was up for any ride. Now my equilibrium protests, and that combo nearly did me in. 

But all in all, we had an amazing evening. It was wonderful to get to enjoy the amusement park rides, the acceptance and make some special memories. 

Back to School Part 2

Today was Teddy's first day back to school, although school started September 1. The reason is he's doing a modified program again this year due to COVID. Essentially he's doing homebound education due to the fact that he cannot wear a mask for an entire day, he puts everything into his mouth to chomp on it and licks random things and has a propensity for seizures when he's ill (and licking things, putting other people's stuff into your mouth and improper mask wearing are all great ways to get ill particularly with COVID making a resurgence). 

Teddy's already a third grader!

So his school program looks similar to last year where he will have 30-minute blocks of time 1:1 with his teacher twice a week for academics. Do we wish it was more time? Absolutely! Is an hour of 1:1 instruction a week a really good starting point for Teddy? Yes. His childcare provider supplements that education with activities at home, either ones provided by school or ones we create. Truly any sort of play with Teddy can incorporate the concepts he'd work on in the school setting, and she has the time to do that when she's alone with him for the day.

Although this is another weird academic year for Teddy, honestly every year is weird for him. He changes grades without changing teachers or rooms, aside from the classroom where he integrates. (And right now, that's non-existent with his hybrid education last year and this.) It's always weird, but in some ways it's easier because we have the same teacher and similar structure. But it never quite feels like he's advancing a grade the way it does for AJ.

Additionally, rather than try to coordinate with all his school therapists, we are continuing with outpatient services for occupational, speech and physical therapy. We trust their protocols and know he's getting quality therapy and more of it than he would in the school setting, so it works for right now. He's also doing music therapy, which he enjoys (most days) and builds on all his goals. 

New this year is adapted physical education. At Teddy's IEP last month, we met his new adapted PE teacher. They discussed the activities sent home last year, which we never did because they weren't quite adapted to Teddy and frankly were overwhelmed with everything else for at-home learning. During that discussion, we brainstormed the idea of Teddy attending his adapted PE classes as a way to begin reintegrating. It's one of his favorite things, so we knew he'd love it. It's also a setting where the kids are in a big room, and there's plenty of adults to assist Teddy in keeping his distance for things like stretching and wearing a mask properly. It's a short enough time (less than 30 minutes) that Teddy can, for the most part, successfully stay masked. 

Today was his first day for his 1:1 instruction with his teacher, as well as his adapted PE class. Trust me, the PE class is as much for reintegrating Teddy to prepare him for returning completely once he's vaccinated as it is for us as parents. We both have some anxiety because we know the vaccine won't provide Teddy the same measure of protection as it provides others. Given his diagnosis, the vaccine will still be effective to some degree, but it's hard to say how much protection it will provide. That certainly makes us uneasy, yet we realize at some point we need to find the balance if COVID never goes away completely. 

Let's just say today was a success for adapted PE. He was super excited to attend today and may have tried to drag his teacher back to the gym when it was over. I'm still waiting to hear if he tried to drag his teacher to the gym when he returned later in the day for his 1:1 instruction.

Back to School Part 1

Our school district began fall classes September 1. For the first time since March 2020, AJ returned to in-person learning. He was extremely excited to be back with his classmates for 4th grade instead of virtual learning. He had a great first day back and is settling into his routine. 

We joked that we had two 4th graders this year because our "adopted" daughter Sigrid began teaching 4th grade at another school in the district. She's actually at Teddy's school, and he'll be so excited to see Ms. Sigrid when he returns to in-person school.

Don't mind the photo bomb of our 4th graders.

Since Teddy's ability to wear a mask is limited (short duration with redirection) and none of his classmates are able to mask, we're keeping Teddy in a hybrid model until he's fully vaccinated. So I'll share an update next week when he has his first day at school.

For now, we celebrate AJ (and Sigrid)!

He's so excited for school & his backpack!

Hello, My Name Is ...

None of us probably give a second thought about introducing ourselves. In fact, there's probably very few introductions that stick out in your mind. You might remember meeting someone new, where your friendship started, etc. but likely not the exact greeting.

You probably wonder where this is going, unless you read my Facebook post over the weekend. We visited a store this weekend, and I was wandering the aisles pushing Teddy when a sales associated asked if we needed any assistance. I replied, "No thanks, we're good," and continued browsing. She then looked directly at Teddy in his adaptive stroller (think mini-wheelchair without all the bells and whistles) and asked him, "How about you? Are you good?"

Right away, I was impressed that she took the time to engage directly with Teddy, who's clearly not your typical child. I asked Teddy if he could tell her yes, and he signed "yes" in response to my verbal prompt. And then I continued browsing because I thought we were done with the interaction until I heard the sales associate say, "My name is Ashley." I looked back toward her to see her signing what she was saying aloud.

I was shocked for a moment and gathered my wits enough to say that we're not quite that advanced in our signs yet, but that we know "treat" and "thank you." She said those were important words to know and encouraged us to find her if we needed any assistance.

Her introduction will stick with me for years. I was able to reach a manager at the store to let him know how much I appreciated Ashley's interactions. Not only did she engage with Teddy, but she was able to speak his language and acknowledge his answer. 

I think sign language is undervalued as a second language. I realize that so many have their own "slang" within sign language or their own way of signing when they aren't hearing impaired but are non-verbal. For example, Teddy uses the sign for candy for "treat," and realistically a lot of signs end up with Teddy pointing to his mouth where he wants the food to go. Still, we can understand him, and with continued practice, others like Ashley will be able to communicate with him as well. 

A Photo Series by Theodore

This weekend Teddy stole borrowed my phone this weekend. He took a series of photos that I'll share here to give you a glimpse of what he sees in life.

The vantage point from the spinning chair, one of his favorite spots.

He's not drunk, I swear!

He opted for a side profile for this shot.

The final photo showcases the upstairs railing that he uses as his launching pad.

Word of the Day: Honack

The non-English word for this week is "honack." It's a Bavarian dialect word that is a person who makes a mistake and then proceeds to try to fix the mistake by making more mistakes. The example my German friend gave me when explaining the word was a person trying to cut a board for a table, but they don't cut the board straight. They then proceed to try to get it straight and keep cutting on this side and that side and end up with just a pile of shavings. The wooden board is then "vehonackelt" by the "honak." 

My friend was sharing that they call their daughter a little honack because she constantly makes bigger messes simply by existing. I understood immediately because my response to her example was, "So everything Teddy touches is vehonackelt?" She gave me a thumbs up and laughed. 

It's true, though, that Teddy will try to help with something and lacks the fine motor skills, or gross motor skills, or comprehension to do the task as intended. For example, he saw his grandpa pouring a drink and immediately ran to help, by lifting the end of the pitcher suddenly. Great intentions, but the end result wasn't as helpful as intended. 

My honak after eating ice cream before he "cleaned" himself.

However, I love that Teddy desires to help. He wants to help, he wants to be an active member of the family and he knows what things should be helpful. Eventually his skills will catch up with him that his help becomes at least more helpful. 

Until then, I'll practice my new German words and try to appreciate the help he provides.

Weltschmerz

I've never heard of the word weltschmerz until I read a book called Running is my Therapy by Scott Douglas. In there, he described weltschmerz as "a German word meaning sadness about how reality doesn't live up to one's hopes." His description was centered around his diagnosis with depression and how that word captures for him the struggle with reality, how he fits into the world and what truly matters.

When I read that passage, the word itself resonated with me because I've often said that disappointment comes when our expectations aren't met. We get frustrated, upset, sad and stressed in life when our expectations don't become reality. If we can set aside the expectations and live in the moment, our lives are more fulfilling.

This sentiment resonates with me. I have the the saying, "Love the life you have, not the life you expected to have," resting on one of our family pictures. It's true of everyone, but it's especially true for me as Teddy's mom.

This is an ordinary moment in the life I have.

There's a poem called Welcome to Holland, along with a follow up that addresses the emotions years later. I've heard from many parents of children with disabilities that these poems resonate with them, ease their sorrow in the early days of diagnosis and put words to what they're experiencing. In my mind, Welcome to Holland could be summed up in a single German word: weltschmerz.

Putting a word to this harder to explain sentiment is handy to me. It doesn't change the life we have, but it gives me a word for the feeling that comes when I forget to live in the moment. Now I just need to learn a beautiful German word that captures the essence of living in the moment to counteract any weltschmerz I might experience. 

Just Another Day

 I mean, who doesn't have an inflatable raft inside a tent that's set up in their garage? Wait ... that's just us?

He looks rather serious here, but he really enjoyed this.

Dave found this raft on clearance for $17 and thought it was absolutely necessary for our land. We intend to put a life jacket on Teddy and see how he fares in his own rowboat (with adult supervision nearby but out of paddle reach). Teddy loves paddles and always tries to steal the paddle for the stand up paddleboard, but he's not the least bit cautious about where he swings the paddle. The advantage of this boat is the paddles lock into the boat, preventing him from wildly swinging them. However, that doesn't mean he can't get in a good jab if you get too close or if you're in the boat with him ... hence the reason we think it's best to send him alone. 

Even if the raft is a bust in the river, it's been a hit in the garage. He's enjoyed boating inside the tent, which was set up to dry out after our camping trip. This may look ridiculous to others, but it's perfectly normal in our world. 

The Return of Training Runs

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.

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. 

Relaxing Respite

Last week we had the opportunity to spend a few quality days with AJ. Between assistance from grandparents and our "adopted daughter" Sigrid, we were able to arrange coverage for Teddy. We headed north to the upper peninsula of Michigan to one of our favorite places: Pictured Rocks National Lakeshore. 

We've visited Pictured Rocks nearly every year since 2009. We've done the boat cruise to see the beautiful lakeshore from Lake Superior. We've hiked to a frozen waterfall in winter. We've camped in the traditional campgrounds. We've hiked 45 miles from one end of the National Lakeshore to the other end. It's absolutely beautiful and yet unpredictable. The weather can be amazing or it can be brutal. The water is usually freezing, but occasionally it's warm enough to truly enjoy. The stable flies can be merciless. The waves can be non-existent or they can be 10 feet high. 

Despite it's unpredictability, Pictured Rocks has grown increasingly popular in the past 5 to 10 years. We first discovered it when it was relatively peaceful, and now visitation has increased tremendously similar to other national park sites. In our words, it's gotten far more "people-ly," but we're still able to find our peace there.

This was our third year hiking and backcountry camping. That means we take everything we need for a couple days in our backpacks. We have done with when AJ was 6, 7 and now 9. He's quite the trooper for the 3.5-mile hike in to camp, especially with the promise of swimming and playing there. This year was the best yet, likely due to his age.

Still smiling on the hike out, although AJ was a bit weary.

We had perfect weather, water and bugs. We planned to bring in our stand-up paddleboard. All told, that meant an extra 12 miles of hiking (6 of those carrying the paddleboard). Although I can't say we'll do it every time, it was absolutely worth it. We were able to explore further along the coastline safely (given that AJ and I aren't strong enough swimmers otherwise). I am not built for cold water, so the paddleboard allowed her to play in the water with the boys. We were able to see the shipwreck by finding it with paddleboard. 

This was the cave that "burped" and tried to eat them when the waves kicked up.

As AJ collapsed into the water for the first time, he exclaimed, "This is everything I could dream of!" We tend to agree. 

As much as we wish we could bring Teddy to our favorite camping place again, it's just not feasible with his walking ability and the trails. We spent time contemplating how we might be able to get him in for a day trip. Honestly our best bet is to rend a pontoon boat, but then we need someone who's a boater to chauffer us. Any scenario that involves us hiking in is going to result in being exhausted chasing Teddy while there after the way in and way out.

And the reality is that both AJ and us need time away from Teddy. We love Teddy dearly, but it's a lot to be his brother and parents. It's a lot of patience. It's a lot of diligence. It's a lot of refereeing. It's a lot of pushing and shoving. It's a lot of guessing games. There's reasons that AJ likes the move Wonder. It reminds him of our life, probably including the line about life revolving around "the son." 

These few days allow us to enjoy each other. We can all have a bit of space, a bit of personal time and plenty of nature. We had a fantastic time and are already looking forward to next year.

Happy hikers enjoying Grand Portal.

Pure Joy

I've often said that Teddy lives in the moment, and he had some very joyful moments last week Thursday. We spent our first night in a hotel in at least 18 months. 

Some kids love hotels for swimming pools, like AJ. Others love the endless selection of shows on TV, like my enjoyment of the Food Network. (OK, most people now have access to so much media that this isn't exciting, but we have never had cable.) Teddy, well, he simply enjoys being someplace different that's not entirely Teddy-proofed.

From the moment he rode into the hotel on his chariot (the luggage rack), he was grinning ear to ear behind his mask. He couldn't contain his joy when we got into the room and immediately ran around exploring everything. He bounced on the bed. He laid on the bed and did his happy feet. He sat on the couch for a millisecond. He discovered there were holes in the wall and insisted that each of us try out each hole to see what we could see. He discovered the bathroom. He discovered the phone. He found the TV remote. 

Teddy loved the windows in the wall. 

He spent at least an hour bouncing around the room. We attempted to settle him for bed around 9, but he chose instead to perch on the air conditioner like a cat staring out the curtain into the parking lot. (He might have dislodged the cover on the air conditioner. Apparently it's not designed for cats the size of Teddy.) 

Teddy was channeling his inner cat.

He finally settled down to sleep by 10:30 p.m. without tears or screaming from any of us. He simply was too excited to lay still. He also stayed asleep until right around 5:45 a.m. For many people, that's insanely early. For Teddy in a hotel room, that's what we'd call a great night's sleep. 

We were both anxious about a hotel stay for multiple reasons, COVID being one of them. The reality is, though, that our biggest concern in hotels is always how Teddy will sleep. We've spent nights trying to get him to sleep until after midnight. We also have routinely been awake before 5 a.m., often on nights that he didn't fall asleep until extremely late. We also had that one morning when he woke up for the day ... at 2:30 ... in the morning. When you spend all your energy fighting him to sleep only to wake up insanely early, it's grueling. 

So in some ways, this was a test of the Teddy travel system. If we had a horrible night's sleep, we would have spent from now until our next trip dreading it because of the sleep struggles. I know one good night's sleep is not a guarantee of peaceful dreams for every night when traveling, but it gives us hope that with his development and the multiple medications intended to help his body rest at night, that vacations might be slightly less stressful.

And that, my friends, is a reason for sweet dreams. 

Happy 8th Birthday!

It's hard to believe that Teddy turned 8 yesterday. With COVID still a reality for our family, we didn't plan a party. On one hand, Teddy adores people and enjoys the attention, so he'd absolutely love a birthday party with all his favorite people. On the other hand, his birthday is just another day to him without all the anticipation that typically comes for a young child's birthday, so skipping a birthday party isn't emotionally scarring for him.

I probably suffer with more "mom guilt" than any suffering on Ted's behalf. That's partially because we didn't arrive home until 5 p.m. on his birthday because we were on a backcountry camping trip with AJ. Again, Teddy's birthday is just another day to him, so it's not like he was devastated we missed his birthday, and it was truly the only time we could secure the camping reservation. Plus, he probably had way more fun with his 1:1 time with his grandma and then a sleepover with his babysitter. 

Ted spent his birthday visiting the small local zoo, where he was fascinated by the lawn mower and the police handing out books more than the animals. He got Culver's for lunch and pizza for dinner, followed by a birthday cupcake that he had to share with his sitter who went above and beyond to make our camping trip possible. 

Then we spent today, the day after his birthday, together as a family. We visited our other sitter's lake house and spent the entire afternoon swimming, boating and chasing Ted as he attempted to get back on the boat. (He really loves boats!) It was an afternoon filled with food, water, and fun, all things Teddy enjoys. 

Amazingly, no one flipped on the paddleboard.

Next year we'll do a party for all our family, and Teddy will be more excited to see his people than his presents. This year, he'll continue to open the fun cards and gifts that arrive and spread out the fun of turning 8. 

We had fun whipping donuts in the paddle boat.

Mayo Clinic of Genomics

Today was monumental for our family. We visited the Mayo Clinic of Genomics for the first time. We spent 2 hours with a team of 5 people who not only know what Congenital Disorders of Glycosylation (CDG) are but have invested their lives into supporting families and research and development of treatments to improve quality of life.

Two months ago we thought the only CDG clinic in the United States was at Children's Hospital of Philadelphia (CHOP). Given that Teddy is relatively healthy, a consultation and trip there didn't make sense for us. However, at the World CDG Conference, I heard Dr. Eva Morava present and reference Mayo Clinic's work with CDGs. Within a week, we were scheduled for a consultation and asked to join a natural histories research study. (Interestingly enough, last month I learned another PIGN family in Canada is attempting to remotely participate in the same study.)

Mayo Clinic, with a nice mask reflection to remind us that COVID is still a thing.

Although I was excited for today's visit, I was also leery of the first portion because it consisted of an EKG and labs. If you've never had an EKG, it's an entirely painless test that should take literally a minute or two, probably a total of 10 if you count hooking up the wires and the stickers. Let's just say our experience took approximately an hour and required an extra tech because we needed 3 of us restraining Teddy. The removal portion of the wires and stickers was really quick because of all the practice Teddy had ripping them off when we were trying to actually do the test ... by then, he was a pro and ripped off most of them himself (aside from the one sticker that we discovered when we changed him into pajamas tonight).

From there, we headed to labs. They needed probably 10 vials of blood or so, along with a urine sample. For Teddy, that means attaching a plastic bag to catch his urine. That experience wasn't pleasant for Teddy and again required an extra tech because 3 is better than 2 for restraints. My apologies to Teddy because I'm the one who removed his collection bag ... and it was sticky, but oddly he wasn't fazed by that.

Once we got through the torture sessions, we were able to finally eat some breakfast (because they were fasting labs) before we actually saw his team. His team consisted of the nurse, who was only there for vitals, and then the genetic counselor, lead researcher, a resident doing rotations in the clinic, a dietician and a world-renowned CDG expert Dr. Morava. We had to move to a different room to accommodate the entire group because we met with them collectively. That had several advantages in terms of shortening our overall visit time because they collaborated for what they needed and allowed them to multi-task on doing Teddy's evaluation while Dr. Morava talked with us. 

Our visit lasted approximately 2 hours and covered everything from a refresher on Teddy's diagnosis to what's intended with the research study to concrete answers to questions we had, all while examining Teddy. While some people might be overwhelmed by 5 medical professionals in a room, with their genuinely caring personalities (and the fact that they weren't doing any procedures), Teddy instantly became his happy self. He was thoroughly showing off for the team, not necessarily showing tremendous fine and gross motor skills, but did he ever show off his charm! He was giggles, smiles, shenanigans (apparently he wasn't supposed to talk on the phone?), persuasiveness (as he directed exactly what everyone should do and where they should sit) and joy. He was perfectly content with all the attention and particularly enjoyed the fact that none of the team cared when he discovered the sink in the room. I'm not exaggerating when I say he washed his hands for at least 15 minutes straight ... if not longer. And he totally dunked his head under the water, too, so his hair was soaking wet.  

We received a couple educational materials, which is pretty cool to get Caring for Your Child with CDG and A Message for Parents of Children with CDG. Although we haven't had a chance to read them yet, I'm eager to and look forward to the digital versions to share with our other PIGN families. Seriously, to see anything in print on CDG just doesn't happen, so it's a wonderful resource. 

Dr. Morava also walked us through a diagram they're piloting for educational materials. Without her explanations, it's probably Greek to you. With her explanation, it helps us understand better Teddy's specific type of CDG. The more common CDGs like PMM2 affect the sugar blocks at the start of the glycosylation process. GPI-anchor ones like PIGN affect later in the process and prevent the final sugar block from attaching (see the left side of the middle part of the diagram). Since GPI-anchor disorders impact later in the glycosylation process, it is harder and more complicated to develop treatments. 

This is glycosylation. Makes perfect sense, right?

The key things they are working on are a blood test to concretely diagnose GPI-anchor CDGs. Right now, the only way to get the diagnosis is through exome sequencing, which is extremely expensive, time consuming and only provides the "likely pathogenic" mutations. In other words, it's not a confirmed diagnosis with a concrete test. They're working on a simple blood test that would allow correct diagnosis sooner, cheaper and more effectively. Also, that blood test would confirm that the PIGN mutations are pathogenic, that there's a GPI-anchor disorder.

That confirmation will pave the way for gene therapy. Gene therapy treatment is not in the immediate future, although she predicts it will be approved in about 3 years. That approval is not necessarily for CDGs, but once gene therapy starts getting approval, it will be relatively simple (her words, not mine) to transfer that knowledge to other genes. I'm extremely curious on what potential gene therapy might have for older individuals, but I didn't ask the question because the treatment isn't even developed yet.

But the exciting thing about working with this team is that we'll learn all these things. We'll know when there's new developments, what's happening in research and be a part of that. They look to collaborate with parents to make sure the materials make sense and that the work aligns with the needs. In fact, she mentioned the possibility of getting someone to research why CDGs present so differently in different people, the wide range of impact and the differences even among family members. That would be fascinating.

One of the things we asked about was the COVID vaccine because we've heard different things on how COVID and the vaccine may impact people with CDGs. Dr. Morava shared that they have patients with CDG who have been vaccinated and then evaluated for the effectiveness. She said that because of how CDGs impact immune systems that the vaccine is less effective. However, she said that GPI-anchor disorders are less impacted than other CDGs in terms of the immune system, so the vaccine should be more effective for a PIGN person than a PMM2 person. She still recommended the vaccine as it provides some protection but cautioned that it won't provide the same effectiveness level as the general population. This was good for us to hear as it means we'll want to ensure Teddy gets the most effective vaccine available, knowing that he won't get full effectiveness from it. 

I know this is a lot of information, some far more technical than usual, but I want to share it for other CDG families as well as for our own future reference.

The team was absolutely phenomenal. They genuinely were excited to spend time with Teddy and were absolutely fantastic with him. My mind is boggled by the incredible intelligence of Dr. Morava, yet the humility and ability to connect with both us and Teddy. (Teddy generally disregards COVID precautions, so he was hugging her while chewing on his mask.) I'm even more amazed that Dr. Morava is Hungarian, spent time working in the Netherlands and then was recruited by Mayo. How you can pronounce all these technical terms in one language, much less at least 3, is beyond my comprehension. Heck, I was just impressed that I can count to 10 in German after nearly a year of Duolingo ...

Oh, fun fact, the researcher is actually from Germany! I'm pretty sure that of the 5 people on Teddy's team, at least 3 of them were born in other countries. I'm so excited to have such a great team for Teddy to partner with his neurologist. We'll be scheduled to go back in a year for the study and follow up, but we now have a terrific resource where we can reach out should we have any questions or concerns.

Now, I just need to remember to share with ya'll in another post the excitement Teddy had about our hotel stay leading up to his appointments.