Never a Dull Moment

I've shared before a morning in my life and a week in our life, highlighting some of the adventures that occur in our household. Today I want to share a 30-minute window of our life, this morning in particular.

It began as an ordinary morning with me running at 5 a.m. with a friend and getting home just before 6 to shower. By that time, Dave was ready to head to work, but he stayed to get Teddy dressed for school before leaving. I finished up breakfast responsibilities for the boys, got Teddy's braces and shoes on, got Teddy dressed and out the door along with AJ around 6:55 a.m. because their buses both come right before 7. And that's where our window begins.
7 a.m. AJ's bus driver tells me to be patient because Teddy's bus driver is sick. I realize that Teddy and I are better off hanging out in the garage instead of me chasing him and his snow shovel around multiple driveways in the cul de sac. We head in the garage, and I shut the door to keep Teddy enclosed while I run into the house quickly.

7:03 a.m. I pull Teddy off the hood of my vehicle. He pulled the step stool over to scale onto my hood and was quite happy to be there. I was quite happy he wasn't on the roof from the 90 seconds I went in the house to put snot-covered gloves in the washer.

7:05 a.m. I determine that his substitute driver is going to be later than just a few minutes, so I quick pop in the house to toast a bagel for my breakfast because I'm expecting a call from Teddy's teacher at 7:15 a.m. to follow up on a recess incident from yesterday.

7:06 a.m. I pull Teddy off the back of the Tahoe as he's standing on the rear windshield wiper about to scale up to the roof. I'm really happy I got him before he got on the roof because it's a challenge to get him down from there. How a child who walks into walks routinely can scale a Tahoe that quickly amazes me.

7:10 a.m. I let Teddy inside my vehicle to play and happened to check my phone, which I had left in my vehicle after running. I notice a missed call and voicemail from the bus company. I expect it to be them letting me know they'd be running late. Instead, the gist of the message was that they would not be picking Teddy up for school as they had no replacement for his bus driver. I was befuddled that was even an option. I understand short staffing, but I have a hard time believing a yellow bus full of children simply wouldn't be picked up ... yet it can happen to a child like Teddy who rides a van instead of a bus to school? I return the call to the bus company, but no one answers. Guess I'm taking Teddy to school. I have no idea how early I can drop him off since his bus driver handles that.

7:15 a.m. I begin driving around with Teddy since he's already in my vehicle. His teacher calls me to follow up on an incident that happened at recess yesterday. There was a note and an e-mail to call him, but I didn't see those until after 8 p.m. and didn't want to disturb him then. It turns out that incident was Teddy eloping at recess and being missing for 5-10 minutes. He was riding his adapted bike and somehow got past all the para-professionals and playground staff. He was found stuck in a snowbank by one of the three roads that surround the school. He thought life was grand. The rest of us, not so much. I know there was absolutely no ill intent by his team at school, but Teddy cannot be trusted with his own safety. It's rather unsettling that Dave and I had a conversation last night, before we knew of this, that Teddy was most likely to die from complications from his disorder or his lack of safety awareness. We're grateful yesterday turned out as it did because it could have went very differently. His team is safety planning, so we'll work with them to make sure changes happen to keep Teddy safe from himself.

7:30 a.m. I drop Teddy off at school and head to work. I'm glad I'm only his mom and not his guardian angel.

If You Need a Smile ...

... Teddy has one to brighten your day.

Teddy lives in the moment and loves life more than most. Choose happy.

I Heart CDG

No, I really don't love CDG, but that's the button I wore the other week to AJ's school. AJ designed buttons for us to wear while we shared with his class about CDG and Teddy, so I proudly wore mine.

Every year since kindergarten, AJ and I have presented to his class to share a bit about Teddy and his diagnosis. I view it as a great opportunity to help his classmates understand not only a bit more about Teddy in particular, but also how to interact with people with disabilities. (It's easy. Like they're people.)

AJ talked about adapted equipment Teddy uses. 

AJ put so much effort into this presentation, with obvious love for his brother and a desire to help others understand Teddy. This was the first year where he did the majority of the talking with me adding a few things and guiding a few questions. He put together a Power Point presentation and did a very nice job with that. I showed a few pieces of Teddy's equipment, such as his chair and demonstrated the backpack carrier with AJ. We talked about how these things allow Teddy to do the things we enjoy as a family.

The kids listened so well.

Then we played charades with his class. AJ used his list for Valentine's to divide his class ahead of time into three groups, and he even created the charade ideas this year. They were definitely really tough, such as "No bullying" or "I love Oreos." We use the game of charades to help the kids think of what it's like to communicate without talking ... how frustrating it can be to not be able to talk and be understood but also how hard it is to guess what someone wants or means from a few gestures. One boy nailed it on the head when he said, "You can't just give up because Teddy can't tell you."

I have spent time in AJ's classroom on a regular basis, and I can say without any exaggeration that I have never seen his classmates sit or listen as well as they did for his presentation ... at least until he passed around the pictures after about 20 or 30 minutes of talking.

As long as AJ's teacher is willing, I hope to continue this tradition every year. I think it's nice for AJ to be able to share about Teddy with his classmates to build some empathy and understanding. I also think it's absolutely critical that children get exposure to others who are different to demystify things and help them understand that children with disabilities are still children who want to play and have fun in their own ways.

Teddy's Idea of Heaven

Teddy loves buses. He points out every single bus we see, whether it's a yellow school bus, a city bus or a bus traveling down the highway. He thought the bus rides to the parks at Disney were a fantastic attraction, rather than just a means to get to the fun stuff. He thinks the bus ride is the absolute best part of every field trip. I've often said his ideal field trip is a bus ride to the bus yard to tour all the buses, maybe with a stop at Culvers just for ice cream on the way back to school.

He got about as close to that as he'll probably come this week when he had a half day at school. We're in between consistent childcare, which means Dave and I are flexing our work schedules to be home when Teddy gets home from school. There's not much flexing to do, though, to be home at 12:30 p.m. When I mentioned to his bus driver, Lori, that we were still working on plans for the half day last week, she said that she could watch him because he's the last kid she drops off that day. I chuckled and said that I still want her to like Teddy, and I'm not sure that would be the case if she had him not strapped into a seat for a few hours. She insisted she'd love to watch him, so we agreed for just a couple hours. (Again, it's not that we don't trust her with Teddy, but we seriously still wanted her to like Teddy after the experience.)

So, on Wednesday Teddy rode to the bus station with Lori. When she opened the door, and he realized he was getting out there, he was super excited.

Picture his arms flapping with excitement, too, and bouncing in his seat.

They went inside, said hi to the people at the bus company, and then Ted willingly got into Lori's vehicle. I think the novelty of going with Lori in a different vehicle made it OK because I guarantee you that if I tried to get him to leave all those buses behind, he'd have melted into the ground in a 50-pound pile of Jello.

They came to our house and had fun for a couple hours until Dave got home around 3. I think they had a fantastic time, aside from Teddy scaring Lori by climbing the outside of the stairs holding onto the railing like a mountain goat (except mountain goats don't hold on with their arms). Typical Teddy.

When I loaded Teddy into her van the next morning and thanked her again, she said, "No wonder you stay so skinny!" I laughed and said that Teddy never stops, ever. She laughed and agreed but said how much fun they had.

We couldn't be more grateful to have Lori as our bus driver. She took over two years ago when we were struggling to get Teddy to school on time and has been a Godsend. She's more than a van driver. She's a part of our extended family.

Wisconsin Winter is Snow Great!

Wisconsin winters can be cold, snowy, dark and long. But, there's plenty to embrace with the right attitude. One tradition we started 4 years ago was a winter picnic. In past years, we've headed to my parents' farm for a day of tubing in my dad's amazing creation called The Beast and a picnic over a campfire in the woods. Some years, it's been bitterly cold, so the picnic was just long enough to cook and eat our food. Other years, it's been warm for Wisconsin winters, so we've spent the entire day tubing and playing in the snow. 

This year, we had a warm day predicted, but my parents had too much snow for a 4-wheeler to pull the Beast. My dad could have pulled the boys with the tractor, but that's much slower and not quite as entertaining. Plus, Teddy would want to ride the tractor instead of tubing behind it. So my dad suggested we meet at the land for the day, which worked perfectly since we wanted to get a few things done in the garage. 

The Beast fits two adults and two children still!

It meant a several hour drive for both us and my parents, but it was worth it. We were blessed with a nearly 50-degree day, which is incredibly rare. My folks brought the Beast in their pickup, and we have our Ranger down there to pull it.

We spent about an hour tubing, and then started a fire. We roasted hot dogs, and Teddy bit my finger instead of his hot dog. But he was hungry enough at least to stick around for his hot dog before he started wandering around with a shovel to dig in the snow. 

A winter picnic wouldn't be complete without a log as a seat.

Then the boys did some more tubing while Dave tried his hand at winter fishing and I threw some insulation in our back room of the garage. During some of the tubing times, we tried our hand at snowball fights. Teddy sampled quite a bit of snow as we went, and I flipped AJ off the tube only once for good measure. 

We're so blessed to have this land and to enjoy it on this beautiful day!

This was a perfect winter day! It was peaceful, fun and productive. We had so much laughter, along with peaceful moments on the tube, fun memories and a bit of work done at the land. I'm so grateful for this tradition, and it was awesome to bring it to our land this year. 

Life with Teddy is Scary

Remember when I said I'd take puke over fevers any day? I didn't need to test that theory again so soon.

Last night was a normal night, although Teddy didn't settle down to sleep on his own. That's not uncommon, so Dave went to snuggle by him. When he came down, he informed me that he changed a really liquid diaper (hence blankets and a giant stuffed elephant going in the laundry). Teddy was asleep, though, so we figured it was a one-time thing ... until 2 hours later when Teddy was crying. I had already been asleep for a about 20 minutes (something about getting up at 4:10 a.m. to go running), but I crawled out of bed to assist Dave with another liquid poop diaper.

We ended up with poop down Teddy's legs from pulling down his pants, so we decided a shower was needed. I was concerned that would wake him up and make it hard for him to settle back down. How right I was for the wrong reasons. As Dave showered Teddy and I cleaned his room, Teddy started scratching his neck. By the time he came out of the shower, his arms were bright red, and he was developing hives.

This is the aftermath of the hives on his neck, all the scratches.

That was enough for us to determine the ER was where Teddy needed to be, so Dave got him dressed while I threw things in a diaper bag. They were on their way, and I pretended to try to sleep. In reality, I was texting Dave for updates and worrying. Teddy had more diarrhea, hives head to toe and lips swelling, so we were glad we took him to the ER when we did. When Teddy puked, Dave pulled the trigger to call his parents at 11 p.m. when they were sound asleep to get someone down to our house, so I could head to the hospital as well.

The last time Dave and I were both at the Oshkosh ER with Teddy, we ended up inpatient at the ICU in Milwaukee. So, just to be safe, I threw together several changes of clothes, deodorant and toothbrushes. As I did that, I realized this is the difference between our lives and parents of typical children. If it were AJ instead of Teddy, we'd have given him Benadryl and monitored him at home. Because it was Teddy, we went to the ER, both of us terrified of seizures and the endless string of what if questions.

This photo captures how wonderful Dave is as a parent.

When Dave's dad came down, I headed to the ER shortly before midnight. I made it there for the PA's report where we determined that Benadryl would be sufficient rather than adding steroids. The best guess was a stomach virus, complete with viral hives. (We never had experienced those, so they were rather scary with how quickly they developed and overtook his body.) We headed home, where Dave probably didn't sleep all night as he laid awake worrying about Teddy.

Me, I knew I was the one staying home with Teddy all day, so I got the 5 hours of sleep I could. Teddy had a few more diarrhea diapers this morning, but by 8 a.m. he was pretty much his usual self. As I told both my parents and my in-laws, it looked like a tornado went through our house ... a few times. That's a good sign because that means Teddy is feeling better.

Fingers crossed that we all get a lot more sleep tonight. Even when Teddy's up half the night sick, he still doesn't believe in the restorative power of naps as you can see below.

Would You Rather?

In the game of parenting, I'm guessing most parents would pick a mild fever over vomit. I'll take vomit any day as long as there's no fever. See, illnesses in general, particularly those accompanied by a fever put Teddy at a greater risk for seizures. Anything that weakens his immune system can also weaken his threshold for seizures. We see this most often with fevers, even mild ones.

**Disclaimer** Stop reading if you have a weak stomach. Don't read this if you're eating. Don't read this if you're about to eat. Feel free to continue reading if none of those apply. We're taking a ride on the vomit comet.

So when my mother-in-law informed me Friday night that Teddy puked, I wasn't overly concerned. (I was at work finishing a critical project, which is why I had left Teddy at my in-laws last minute after his therapy appointment.) When she said he puked his entire supper, I was a bit more concerned because that wouldn't be explained by eating too fast or playing too hard to cause him to throw up just a bit. When I had to drive home alone with Teddy in the dark along the same stretch of highway where he seized non-stop and ended up in the ICU, I was even more worried. I didn't know if his crabbiness was tiredness or because he wasn't feeling well, but he made it home with no issues.

However, as soon as he stepped inside the house, I could tell he was going to puke. And this was when I realized there's no good way to help Teddy puke, except for perhaps a bucket, which we didn't have. Poor kid. As a child, I always puked in the toilet, which I thought was gross, but sometimes the grossness of it helped me puke and then feel better. AJ pukes in the toilet, when there's enough warning of course. I'm pretty sure if we tried to help Teddy puke in the toilet, he'd lick it or stick his head in the water. So he puked partially in the sink, partially on the floor, partially on the brand new roll of toilet paper and hey, some made it on the toilet for good measure.

He was back to normal today, so the just-in-case bucket was a hat.

Then I had Dave gagging and informing me that he had to leave or he'd puke. AJ sighed and said, "I'll help clean up the puke." I reassured AJ I didn't need him to help clean up the puke, but I would appreciate a few minutes to clean it up before he showed me his prize from school that day. (I'm pretty sure I still had puke on my shirt when I saw his prize.)

We were all pretty concerned, but Teddy managed with no fever, two bouts of puking and a few hours of miserableness. As gross as it is, I'll take cleaning up half-digested hot dogs and banana chunks from a sink over a fever. Yes, my mother-in-law lied. Teddy didn't puke up his entire supper at his house. I can vouch for that.