Wednesday, April 24, 2019

It Truly is the World Wide Web

If you read the About Me section of this blog, you'll see that I wrote:

We decided one thing we could do was start a blog to create a bit more awareness and give other families with this disorder the opportunity to connect. 

We started this blog within a few months of getting Teddy's diagnosis. There was so little information available, and so much of it was so dismal and didn't match our experience with Teddy. We wanted to put more information, including more positive (yet realistic) information out there, for others searching for this diagnosis. We also wanted to provide a way for other families to connect, particularly before we found our amazing Facebook group of families.

In those early days, there were perhaps 5 other families in our Facebook group. It was a big deal when every six months or so another family got added. In the past two weeks, though, we've added 3 more families with CDG-PIGN to our Facebook group. That absolutely blows my mind that we're growing so much and that families are getting connected to this amazing resource sometimes even the same day they get the earth-shattering diagnosis.

The thing that's made my day, twice this year, is that I've had two different mothers reach out to me after reading this blog. One doesn't use social media, so she wouldn't find our Facebook group. The other came across the blog while searching the Internet and reached out, so I could connect her to the Facebook group. That particular mom is from Germany. This blog is reaching out around the world to connect others, to give them hope and to bring them into our group of CDG-PIGN families where they have all of us to use as a resource.

When that mom told me that she spent much of her day reading my blog, it just made me smile. Everything on here isn't all sunshine and roses because life isn't always easy (for anyone, regardless of diagnosis or not). But it's realistic, and there's so much positive in our life with Teddy. I'm grateful that even these two families have been impacted by this blog.

And with World CDG Awareness Day coming up May 16, I'm hoping to do another round-up that will include as many of our CDG-PIGN kiddos as possible. Those seem to be the posts that spread like wildfire and reach the farthest. That, and our kids are adorable and amazing, so the world needs to see them. 

Monday, April 22, 2019

We Ventured on Vacation

Our family is known for its adventurous vacations, road tripping across our country to explore our national parks. This year's vacations look a bit different because we're extremely fortunate to experience Disney this summer with Dave's family. That's going to be far more adventurous for us than any of our previous trips. 

We also had a reason to be in Tennessee a few weeks ago to spread my grandfather's ashes on his birthday, so we decided to pull the kids from school for a week to enjoy and explore the areas. We headed down past Chicago on a Thursday night and made it down to Tennessee by late Friday. I was amazed at how well the children rode the entire trip. We had barely any tears through the entire trip ... at least due to car rides. 

This was the first time the boys met my grandmother (and much of the family on my mom's side). They were welcomed with open arms, and Teddy couldn't have been more excited to see a lawn mower sitting in the yard. My aunt alternated her time between giving Teddy rides on the mower and playing games with AJ. Both boys adored her, and I appreciated the chance to visit with some of my family while they were playing with her. 

Teddy spent much of his time on this lawn mower, along with anyone he could grab.
Saturday and Sunday were family-filled days with perfect weather. It was really neat to spend time with family that I rarely see and actually get to know one of my cousins. (AJ was completely smitten with her and describes her as my really nice cousin who likes cats a lot.) 

Teddy snuggling for a moment with his great grandma under the supervision of his uncle.
We had talked about having my parents keep the boys for one day, and I even got them to agree to taking them overnight. However, that overnight was something that sounded good in theory but not in real life when Teddy doesn't sleep on vacation. So, we kept Teddy for the overnight with plans to meet in the morning to drop off the boys. That didn't happen because we spent 2 hours in the middle of the night up with a feverish Teddy working to get him soothed, medicated, monitored and back to sleep ... while looking up walk-in clinics and the nearest ER just in case. That sickness threw a wrinkle into our trip, but we managed to avoid anything worse than fever, constant running nose, coughs and less than $50 between the doctor visit, pharmacy and over-the-counter meds. 

So, Dave and I didn't get our day away from the boys because we wanted to keep a close eye on Teddy. We did that by hiking up the side of a mountain to a waterfall. It was a fantastic hike, despite the rain all the way down. We met up that evening for dinner with my family at one of our very few restaurant meals. Teddy does not sit well at restaurants unless he's really hungry, so it's just easier to eat snacks while driving and piece together meals in hotel rooms. Trust me, I'm a pro at making mac n cheese, quesadillas, chips and cheese and even whipped up some masterpiece burritos this trip. 

We spent Tuesday exploring Great Smoky Mountains as well, getting both boys their Junior Ranger badges. Before we left Wednesday, I ran to the accessible trail head while Dave and the boys ate breakfast. They brought me breakfast, and we enjoyed a family walk at a leisurely pace, stopping to enjoy the snails that we finally spotted. 

I love how much AJ loves Teddy. He's such a helper. 
Then we headed to Mammoth Caves. We spent some time exploring the land above the caves before heading below the next day for the accessible tour. It's great that there's a tour that makes the cave accessible for nearly everyone since strollers and backpacks of any kind are not permitted. We weren't sure if we'd make it through the entire tour because it's hard for Teddy to sit in his wheelchair for extended periods if we're not constantly moving. We did pretty well for a while, and then we had a phenomenal ranger who let Teddy hold her flashlight and even helped him shine her flashlight at the cave ceiling to look at crystals. She engaged him in conversation and did everything she could to help him enjoy the experience. We didn't make it through the entire tour, though, and had to head to the surface early with a ranger escort. Although that wasn't ideal, I couldn't have been happier with our experience with that ranger. (I did send an e-mail to the National Park Service afterward because I believe positive feedback is critical, not just complaining when something goes wrong.)

Teddy's aunt captured this great shot of Teddy.
The rest of our trip included stops at Lincoln's boyhood and adult homes, where we learned so much about one of our nation's greatest presidents. Seriously, Abe's mom died of milk sickness, which is such a weird thing. Google it. It's interesting.

But the highlight for the boys was the park that Dave and I feel shouldn't be a park, but that's beside the point: Gateway Arch. They both loved the tram ride 630 feet into the sky in the space pod, as we called it. Teddy thought it was so cool that he got to explore the top of the arch and peer out the window surrounded by 80+ of his closest friends. (So many people packed in such a small space!)

We ended our trip with a visit to Indiana Dunes, which we visited last fall when it was a National Lakeshore. It was upgraded to a National Park this winter, so we had to check it off our official list. It was the 50th national park for me and Dave, the 38th for AJ and 36th for Teddy. It also allows us to say we've visited all the national parks in the lower 48 ... again ... for now ... until they upgrade any more ...

Vacations have never been relaxing for us, and they'll continue to evolve over time as we adapt to Teddy's changing needs. For that Disney trip in June, though, I think I need to call Teddy's neurologist to find something that helps that child sleep for the sake of everyone's sanity!

I love hiking, even when my pack wiggles, giggles and tries to steal my sunglasses.

Saturday, April 20, 2019

Happy Easter!

I've been absent from our blog the past couple weeks because we were busy preparing for, surviving (and enjoying) and recovering from our recent vacation. More to come on that another day.

In the meantime, I want to talk a bit about Easter and school. This past Thursday Teddy brought home several pieces of Easter artwork, crafts and treats. It seems like Teddy's teacher or one of his para-professionals made baskets out of paper for each of the kids in the class. He came home with this little basket with a cute bunny and a couple hard-boiled eggs. He also came home with a Rice Crispy bunny that his team helped him make. I knew to expect some fun things since his teacher sent me pictures earlier in the day.

Making his rice crispy bunny is quite the feat. 
It's obvious from the pictures how much effort his team puts into Teddy's success and happiness as well as his classmates. The picture shows the efforts of three adults: two helping Teddy successfully push the food into the mold, and one capturing the memories. I'm so grateful that the staffing ratio allows for these type of special projects, which work on so many of his fine motor, focus and other goals. Everything has the power to be educational, and it's no different for a child like Teddy who learns through doing and watching.

Today, in fact, I was amazed at how quickly Teddy mimicked his older cousin dragging a stick on the sidewalk. As soon as he saw her do it, he tried reaching down to do the same. It's hard at times to get his focused attention, but when he's interested in something, he's soaking it all in.

That's just a tangent from the point of this post, which is Teddy has an amazing team that works with him at school. I swear they have the patience of saints, and his teacher always finds so much positive to say. I'm glad he's so well accepted at his home school, both in his classroom and when he integrates with his kindergarten class.

He's so proud of himself ... mostly because he's in the teacher's chair.
And since the odds of a nice family photo tomorrow are slim, here's wishes for a blessed Easter from our family to yours.

Wednesday, April 3, 2019

Field Trip Fun

I tell you, the children in Teddy's kindergarten class are some of the luckiest kindergarten students ever. They have been on a whopping six field trips this year, all with educational value tied to their curriculum, but field trips are field trips. They are fun, exciting and great opportunities to learn and make memories with your friends outside of the classroom. And Teddy has been included on every single field trip. 

The last one I attended was to Culver's, where Teddy loved the ice cream and french fries and did fairly well during the tour. Of course, he loved the bus outside in the parking lot more than sitting still, so much so that my arms were sore the next day from wrangling him. Still, he had a great time and managed really pretty well during the tour itself.

I think his dream field trip would be riding a bus to tour the bus company.
The most recent, though, neither Dave nor I could chaperone because it fell the week we're leaving for vacation. So, we couldn't arrange our work schedules to make it work, and quite honestly, the thought of keeping Teddy in a seat for a play wasn't too appealing. 

The day before the field trip, we got an e-mail from the kindergarten teacher that there were enough staff to accompany Teddy. All we had to do was send in the permission slip and the money for the ticket, and Teddy was able to go, just like every other parent.

First, how awesome that Teddy's teacher and kindergarten teacher didn't just accept that Teddy couldn't go because we couldn't chaperone to support him! Second, Teddy got to go along on this field trip, made it through 20 minutes in the theater before heading to the lobby and had a great time with his para-professional. She got to witness his sheer joy to ride the bus. Seriously, that boy jumps for joy each time he gets to ride the bus.

Look at his happiness to be included!
Second, I love the experiences not only for Teddy but also for his classmates. When we went to Culvers, all the kids were excited to have Teddy join them, with a chorus of, "Hi Teddy!" and "Teddy's coming with us!" There was also one girl who reached for Teddy and held his hands for portions of the tour and patted his arm as they learned all about Culvers. For a parent, that acceptance is priceless. 

We couldn't be happier with how Teddy's been included in the kindergarten class, particularly with the field trips. The dynamics of Teddy's regular classroom changed this spring, so that his teacher and para-professionals have more time to spend with each child. That means more educational opportunities and more inclusion, which benefits everyone.