Our Southwest Adventure: California

This trip had been planned and anticipated for over a year, so the fact that it has already come and gone is astounding!

It all started in Pennsylvania with my parents flying across the country so that my mom could turn around and fly back to California with Tori and me (to assist with all of Tori’s things). The guys remained in Pennsylvania working on our bathrooms – our long-awaited remodel! We’ll blog about that soon.


The girls spent 2.5 days in Red Bluff seeing family and friends before heading south to Central California to see more family and friends. We stayed with Uncle Rob and Aunt Susan (and forgot to get a picture!) and enjoyed our visit. It was so great to see my college roommate, Leslie, and her family, as well! It has been YEARS.

Friday morning we headed to Southern California to show Tori where Mommy went to college (APU), and to meet up with many college professors and friends.

Read about our APU adventure here!

After a wonderful afternoon there, we headed to my favorite outdoor mall in Ontario – Victoria Gardens. We met up with so many dear college friends and their families that evening.

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After spending the night in Ontario, my mom, Tori, and I picked up Brennan and my dad at the airport and headed to Disneyland! It was very crowded, so we didn’t get to ride very many rides, BUT the “Paint the Night” parade made it worth the heat, the crowds, everything.

See pictures and read about Disneyland here!

The next morning we began our journey to the Grand Canyon!

Tori’s Bucket List: Go to Disneyland

Being from California, I have gone to Disneyland probably one hundred times – mostly thanks to having an annual pass (when it was cheap!) most of the years I lived in Southern California. I love Disneyland and I wanted Tori to experience the magic there, especially when we were offered tickets from a Team Tori friend! Thank you, Carmela, for your generosity!

Since it’s their 60th anniversary year, they have a brand new parade called “Paint the Night” and we had heard great things about it. Supposedly they have one million lights in the parade itself! Once we heard that, we knew we had to take Tori to see it. So, we added Disneyland to our trip itinerary with Grandma DeAnne and Grandpa Ken and made it happen!

Our day didn’t go as planned, so we didn’t make it into the park until 5pm. And it was hot (over 100 degrees) and crowded (holiday weekend, and a Saturday), so we didn’t get to take her on as many rides as we would have liked. BUT, it was still magical and so much fun!

We were so blessed to be able to briefly meet up with some members of our Krabbe family – Judson‘s parents and sister, Jessie, who gave Tori an adorable stuffed kitten – as well as some of our RYFO friends. Thank you for coming to meet up with us! Brennan’s friend, Todd, who recently moved to California, also joined us and we enjoyed his company.

We took Tori on a couple of rides before the parade and that apparently wore her out because she slept through most of the very loud, very bright parade. What can you do with any kid in those situations? Haha. She was tired and she wasn’t willing to wake up for anything. The adults enjoyed the parade, though, and agreed that it was well worth the crowds and the heat.

Tori woke up when we got on the tram to go back to the RV and she seemed so enthralled by it. It cracked us up! We felt like a “normal” family at that moment because kids are SO unpredictable and you never know what they will enjoy (i.e. the box instead of the toy).

We pray that we will have another opportunity to take her to Disneyland because there is so much more for her to see and experience!

Tori’s Bucket List: Baltimore Aquarium

We had a great time yesterday going to the National Aquarium in Baltimore with Brennan’s family! This was the first time that his mom, siblings, significant others, and children had done anything together – hopefully this becomes a frequent tradition. 🙂

Though many of the exhibits were difficult for Tori to see (either because you had to look down at them or because the aquarium was rather dark in general), she was very alert and attentive throughout our visit and we did our best to find things she would enjoy seeing.

Her favorite thing was the wall in the cafeteria that changed colors – she was fascinated!

Thank you, Probst Family, for making this adventure possible for our family! ❤

Here are a few of our pictures from the day:

Our Quinn’s List Experience: The Final Day

Today was very low key and filled with friends and family. It was wonderful, even though it poured this morning. We prayed that the forecast of all-day rain wouldn’t be true, and God answered those prayers!


  
 We had an adventure getting to Downtown Disney (not as easy to access as it is at Disneyland) to have lunch with some friends of ours who live in the area. The monorail doesn’t go to Downtown Disney, so we had to take it to a resort and then take a bus. The first bus had no available handicap spots, so we had to wait another 15 minutes for the next bus.

We eventually got there, and lunch was great even though we were so late because of the transportation delays. 😄 We had a wonderful visit and I am so glad they came down to see us!

The manager at the Rainforest Cafe gave us one of our meals for free after hearing about Tori – which was so unexpected! The waiter also said Tori would be in his prayers ❤️

We went back to Magic Kingdom in hopes of seeing Snow White because Tori was so adorable in her Snow White outfit!


But, by the time we got into the park and found her, they had already cut off the line and wouldn’t  allow us to see her then. The cast member was apologetic and explained that the parade was about to start and that Snow White had to get ready.

We were disappointed, but, overall, Disney was more than amazing at accommodating Tori during this trip, so we didn’t complain! We did post about it on Facebook because we knew that many cast members follow her page and we hoped that someone would have connections.

After that, we went to meet Cinderella and Rapunzel, which was special.


  

While we were in the area, Brennan and my mom took Tori on Dumbo again and I took pictures on my camera.

About that time, a cast member named Kaylei informed us that Snow White would be in Epcot at 5:20pm and 6:20pm and that she could get us in to meet her!

We rode the train to the front gates and got our exercise as we took two monorails and practically jogged to get there in time.

Kaylei led us back to Germany and when we got there they had just cut off the line. She spoke with the cast member who was with Snow White and he then asked Snow White if she would take one more given our situation…and she said yes!

We would have been thrilled to meet Snow White at the first attempt, but our story of having to chase her through two parks is much more fun.



Thank you, Kaylei, for everything! ❤️


We didn’t get to see a ton in Epcot but did stop for the final MemoryMaker photos of the trip:

  

  

We finished our day with dinner at the Grand Floridian with Brennan’s former boss and friend, Ginger. She is now a Spa Director for Disney World and it was so great to spend time with her!

We are all packed and ready to head back to the airport early in the morning. It has been a magical week here at Disney World!


Thank you, Quinn Madeleine, for making this happen!

Our Quinn’s List Experience: The Travel

Monday was a day of preparation and travel for our Disney World adventure, thanks to the Quinn Madeleine Foundation. They grant wishes for terminally ill children under the age of three in honor of their daughter, who also had a leukodystrophy ❤️

As we have mentioned before, traveling with Tori now requires a lot more stuff. When our large suitcase was weighed, it was nine pounds overweight.
I explained to the woman what was in there and why we were traveling, and she did the following: she made an exception for our suitcase weight because of medical supplies, checked Tori’s breast milk for free, allowed us to be very first on the plane, AND they helped us carry everything to our seats!

THANK YOU, Allegiant, for making our flight with a terminally ill child so much easier!! ❤️


  
We used ÜBER to get to the resort and our driver was so kind. We really enjoyed visiting with him during the drive! (If you’re interested in trying ÜBER, use this code – 1MA3XUE – for a free ride!)

Tori traveled well (her 17th flight!) and fell asleep on the ride home. She stayed asleep even while we put her in pajamas! Tired girl.

My mom and Brennan’s Aunt Daun and Uncle Tony were waiting for us at the resort when we arrived, and we had a good visit in our condo.

The Quinn Madeleine Foundation thought of EVERYTHING for this trip! We knew most of what to expect beforehand, but we were surprised when we walked into our condo!


  
When we arrived, there were balloons everywhere, some fun gifts for Tori, groceries in the kitchen, and an amazing place to stay!

So blessed.

We discussed details for the next day – our first day at Disney World – and then headed to bed. 😄

This is the “biggest” thing on her bucket list and we can’t believe we are here!

We are so excited to experience this with Tori!

Tori’s Bucket List: Statue of Liberty and Ellis Island

Both Brennan and I love history (I minored in American History), and we will teach each of our children how to appreciate and enjoy history to the best of our ability.

Though Tori is young, it’s never too early to start introducing her to history 😉

Neither of us had been to the Statue of Liberty or Ellis Island – something we think
every American should try to do – so this was a “first for the whole family” adventure!

We took the Staten Island Ferry to Battery Park, and then took the boat to the islands – five boat rides total.

While we were there, the weather was amazing and the clouds made for some stunning photos.

We were able to meet up with some of our Leukodystrophy Family while we were there, which was wonderful. The Serreno family came over to Manhattan and we had dinner together.

Tori was alert and content (except for nap times, of course) and truly seemed to be enjoying the scenery, the sounds, and the weather. We are so thankful that we had this opportunity! We were also glad our friends, Billy and Michelle, could join us on this adventure.

It was a great day. ♥

Traveling with Tori 

  
I wanted to provide some insight into how (and why) we travel so often with Tori since some have asked questions related to this topic.

Traveling with any baby is a challenge, but traveling with medically fragile children is even more difficult. The amount of supplies we must bring is daunting and it isn’t the easy thing to do.

Both Brennan and I love to see new places and experience new things, and this is something we always imagined that we would do as a family.

Now that our time with Tori may be short here on earth, we decided to allow her to experience as much as we can while she is still doing so well. 

So, what does it look like?

First, everything we do is based on how she is doing and what she can tolerate. 

We do not pack our schedule – we allow for plenty of rest times.

Our trip to the Jersey Shore is a perfect example. We did one big thing a day, and if we went out to do something else it was only after several hours of relaxing at the condo. We do not push her and we allow for plenty of downtime to ensure that she is content.

She does so well no matter where she is, and we can attribute that to how much she has traveled since birth.

Second, each experience we choose is something that will stimulate her and that she will enjoy. 

We know she enjoys looking at colors and lights. We know she enjoys music. She likes being outside (unless it is too windy). We avoid situations where it may be overstimulating for her, and we always take the weather into consideration.

Third, the Bucket List is just as much for Brennan and me as it is for Tori, but it is still all about her. 

If she were not able to travel well and experience these things, we wouldn’t do them. She does SO well in the van now – most of the time – and we think through each travel experience to ensure her comfort and enjoyment.

Without a miracle, there will come a day when it is too difficult on her to travel, so we are doing as much as we can now. If we complete the Bucket List and she is still healthy, we will add more! 

Having this list has reminded us to focus on living with her and making memories. 

It is so easy when you have a sick child to want to stay at home and never do anything fun – this forces us to pack up all of her supplies and equipment and DO things as a family, to create memories and live life together.

The Bucket List has made the past six weeks so much fun and we can’t wait for what’s to come in the next six. ❤️