Arches National Park

We made memories at this stop that are engraved in our minds. Tyson rented a Jeep so we could be a little more mobile to check out some trails. We tried to do a little hiking, but the heat got to all of us! So we decided to take the Jeep on an off-road trail that was recommended to us; Shafer Trail in Canyonlands National Park.

I enjoyed the trail for the first 30-45 minutes.. after that I panicked. We had no cell service, a paper map, it was 84 degrees, we had enough food for 2 feedings for Dax, 4 bottles of water, no snacks, and an overheated dog panting in the cargo space, and I was surviving off of a breakfast burrito. I didn’t know the trail began at the bottom of a canyon and the only way out was to drive all the way up to the top of the canyon on a narrow gravel/dirt road with NO guard rails. It was awful. I cried the entire way up the canyon and Dax was nice and relaxed – he must like a good adventure like his Dad. The trail was 18 miles long and we climbed 2,000 feet! After 2.5 hours we finally got the tires back on pavement. We decided that we will NEVER drive that trail again, but the views I have to admit, were worth it.

We went to Arches National Park later that day, and once again, beautiful scenery. We got a great view of Delicate Arch and Dax was even able to sit on top of Balanced Rock!

Zion

The next stop on our trip was Zion National Park. On our first night, we stayed at Quail Creek RV, about 45 mins from Zion – we stayed there long enough to have an outdoor movie night and to do laundry (there’s ALWAYS laundry). Tyson was fortunate enough to find last minute availability at Zion Canyon Campground and RV Park so we stayed there the next two nights and we loved it! We were about a half mile away from Zion and walking distance from little shops and restaurants so it was the perfect location. Dax even got to taste a little vanilla ice cream! We had great weather the entire stay and Dax got to take a nap outside. We learned that Dax really loves the outdoors, it seems to calm him. We went on the only pet friendly trail in Zion, Pa’rus Trail. Ozzie attempted to walk it all, but we would’ve been out past our bedtime.

The Grand Canyon

The first stop on our Dax-Mobile adventure was the Grand Canyon. We were fortunate enough to stay at a campground just near the South Rim. We got the stroller packed up and walked about a mile and a half to Mather Point. Once we got to the lookout point, Dax made his appearance be known. We quickly realized we were “that family” that breaks the silence. Dax was crying (we interrupted his feeding for him to take in the view) and Ozzie was gasping for air.

We went back to Mather Point a couple days later on our way to Zion to have Dax take in the view again (since he wasn’t preoccupied with his food this time around) and Ozzie was able to get a closer look too. I was happy and felt content that Dax was able to see the Grand Canyon again. I loved having a couple extra moments to talk to Dax while enjoying the views. I also had an opportunity to go out to a lookout point for a couple of minutes on my own to talk to God, and for that, I’m grateful.

Many people were concerned about Ozzie; “He’s hot.” “Oh his tired.” “Can I give him my water?!” Little did they know, Ozzie rode the majority of the way in the stroller the first day, and on our second day at the Grand Canyon, Ozzie only had to walk a short distance from the parking lot.

“Life isn’t meant to be lived perfectly… but merely to be lived. Boldly, wildly, beautifully, uncertainly, imperfectly, magically lived.”

The Dax-Mobile

Well. We bought an RV! I never thought in a million years I’d be excited about road-tripping in an RV and staying at campgrounds, but I can’t wait! Tyson enjoyed traveling this way as a kid and always tried to convince me to get an RV, and here we are…. Tyson finally gets to have his RV. We decided this was going to be the easiest way to get around with Dax [and Ozzie]. We can’t spend all of our days with Dax staying close to home, he’s gotta see some things!

If there’s a Heaven on Earth, it’s the Grand Canyon – and that’s where we’ll spend Mother’s Day and begin our adventure.

Here’s a sneak-peek at our map.

Our stops!

  • Grand Canyon National Park
  • Zion National Park
  • Sand Hollow State Park
  • Arches National Park
  • Bonneville Salt Flats
  • Grand Teton National Park
  • Yellowstone National Park – Grand Prismatic Spring/Old Faithful/Yellowstone Lake
  • Mount Rushmore National Memorial
  • Then we’ll stop at Dax’s grandparent’s house in Michigan City on our way back home. We’ll be able to show Dax where I grew up, where we had our first date, and where we got married. We’ll even get his toes in Lake Michigan. Dax has so many people that are waiting to meet him – including two GREAT grandmas. And I know you’re all wondering about Ozzie; he always looks forward to going to Indiana! He gets lots of table food from his grandpa and gets to sleep in a human bed! He’ll need extra spoiling after all of the miles he’s going to put on his paws!

If there’s any takeaway from this post, it’s to get out and live. Go on that vacation. Life’s too short, what are you waiting for?

PCH Type 8.

We were fortunate enough to know within days of Dax being born, that he had Pontocerebellar Hypoplasia (PCH), but it all depended on the genetic results to diagnose his type. There have been approximately 115 cases world-wide with PCH and there are a handful of genes that are “commonly” seen as a reason for PCH. There are 13 different types of PCH and within those types there are subtypes. After 8 weeks – we FINALLY know the details of Dax’s diagnosis. He has been diagnosed with PCH Type 8 which is specific to a CHMP1A gene mutation. It has only been seen in 6 people in the world, to date. Within this group of individuals Dax is the only person that has deletions in that gene as most mutations consist of a “typo” within the gene coding. The chances of this happening are literally less than one in a million. So rare that researchers have already reached out to our medical staff to inquire about adding it to medical literature as the first case found in humans. As we’ve searched for answers, we’ve learned that NO child can be compared, and each have their own individual journey.

Our next step will be DNA testing to confirm that it’s autosomal recessive. There’s always that chance it could be a spontaneous act of nature (de novo). We’re grateful for technology, we can pass this information on to the next generation in our family, and families across the world that find themselves in similar shoes. We’re grateful for the team of doctors that have worked endlessly to provide us answers. And most importantly, we’re grateful for Dax, he’s put everything into perspective on what matters most. We now find joy in the simplest things and we don’t stress about the small stuff. Dax’s diagnosis can’t be changed or cured. The doctors have recommended that we stay cautiously optimistic. But, we find peace knowing that he’s in control of his journey. When he’s ready to be healed, and ready to run and play up above, he’ll let us know.

The little guy turned 2 months old last week and it’s amazing how strong and healthy he is. He’s definitely living up to his name.