Make-a-Wish Trip Part 2

I wish I could say that i was so organized that I could break down every part of the trip and what happened when, but I decided it would be better to just story-tell through the remaining photos!

 

Magic Kingdom has a steam engine that we rode around the whole part. We made a special trip back just for this!

At Disney Hollywood Studios, we stopped by to meet Olaf before catching the Frozen sing-a-long. Colleen had to show Olaf her sandals! Elsa insisted he would love them. 🙂

I don’t have any photos, but we also saw the Finding Nemo musical at Animal Kingdom.

The day we went to Animal Kingdom, there was a lot more afternoon rain that usual, so after seeing Finding Nemo, we ran back to the car before a thunderstorm rolled through.

One of the things I wanted Colleen to be able to was ride the horses back at GKTW. We got up early one of the mornings to ride before breakfast. I’m not sure she knew what to make of it, but by the second lap, she made herself comfy! Now that we’re home, I want to look into Hippotherapy for her.

We also got a day at Universal. This was another park where there was just so much to do and not a lot of time to do it. I also didn’t feel like it had a lot rides she could have done, so we took a ride on the Hogwarts Express. I’ve been wanting to come here since it opened, and it was a magical experience! I bought Hermione’s wand so Colleen could try to spells, but it turns out, I’m pretty rubbish at helping her. (Did you know, you can buy an interactive wand and perform these spells and various locations?) It was fun watching others do it, but when I tried, I really couldn’t make anything happen. Guess I’m 100% muggle.

The last day there, we went to the NASA Space center. I think she enjoyed the videos and providing her own commentary. The bus tour makes very certain her wheelchair wasn’t going anywhere!

And of course, I wanted to do a trip to the beach. I went very unprepared, but I think her day was made. She absolutely loves water! Cocoa beach had quite a bit of seaweed when we visited but the water was amazing. I think she could have spent the whole day there.

I was so happy Colleen had this amazing experience. She loved all the Frozen experiences and it made my heart beyond happy to see her face when she met Anna and Elsa. I want to take her back as soon as possibly, but realistically, we will have to plan! I’m thinking probably what would be the winter here in NY will likely have the cooler temps in Florida. Hopefully then, the heat won’t be too much and she won’t be determined to stick her fingers in her wheelchair spokes!

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Make-a-wish Disney trip!

I’m a little late with this post, but there’s been a lot of things going on behind the scenes. It’s been a struggle to find the time to write, but I’m going to try to post more, I promise! I also think my biggest struggle for this was that there was so much that had happened, it was hard to write and have it make sense. I feel like it’s all over the place. But here’s my attempt!:

Travel

With our bags all packed, we had to be ready to go early Tuesday morning for pickup. Only slight dilemma with this was that we took Colleen’s wheelchair (vs. stroller) for transportation, and it was interesting getting it to fit in a limo, but thankfully, it did!

Colleen (and momma’s!) first limo ride!

I tried to pack as lightly as possible, besides Colleen’s bed, it was just carry-ons’, but I did pack an extra duffel bag for clothes in hopes that any souvenirs would fit in the carryon cases. I think it all worked out in the end. Colleen’s bed, and a few extras, weighed 54Ibs, so I was a little worried about the fee, but JetBlue was awesome!

Make-a-wish gives you a letter that asks if you can meet the captain and see the cockpit.

I told Colleen not to push any buttons! She seemed to be taking it all in. It was a neat experience and she even got wings!

We didn’t bring her car seat this time. It was cumbersome and I’m so glad you didn’t. She was able to sit properly and I felt better that it gave her more room.

Arrival

We arrived in Orlando about 50 minutes ahead of schedule were welcomed by two Make-a-wish greeters. They help you get your luggage and rentals and make that process truly stress-free. I really wish I had gotten photos with them! We were given snacks, water, they helped even helped us load up our rental.

If you even go to Disney and drive, bring $1’s and quarters! That was a vital piece of information we were given and I’m glad because otherwise we’d be pulled over on the side of the road, panicking because we had no change.

If you have a Disney trip for Make-a-wish, you get to stay at the Give Kids the World Village. The amount of things to do here alone were enough to fill a trip!

Before arriving, I thought for sure we’d be ready to explore when we got there, but it was actually nice to relax a little after traveling.

Give Kids the World Village is it’s own little bit of magic while you’re staying there. We unfortunately didn’t get to do everything while we were there, but they have a carousel, pools, movie theatre and so much else. I think one of my personal favorites was the Castle of Miracles. Colleen was able to write a wish on a star, and then they placed it amount 130,000 other stars on the ceiling. It was beautiful and amazing to think about all the children who have been there to make a wish.

Disney: Magic Kingdom

The next day, I let Colleen wake up on her own and we ate breakfast at the village. This was essentially seeing how she would do in the heat, so I didn’t want to wake her and risk Myoclonic jerks. It’s only about a 20 minute drive from the village.

Obligatory photo

I think the biggest challenge we faced while here was the heat. We had a fan attached the the back of her wheelchair, but as you can tell, she didn’t care for the heat. It’s good to know that if you need it, there’s a resting place for you to go, but I believe it was only at Epcot.

Colleen rode the Dumbo ride, her very first!

It kind of became the schedule; a few hours at a park, back to GKTW for afternoon nap, then head back out. It was a lot of driving, but the best option for Colleen.

We came back to Epcot that night to watch the fireworks, and I wish I had the words t describe it. This was also her first time watching fireworks, and I may have gotten a little emotional. The smile and look of wonder on her face was enough to fill my heart.

Sitting to wait! I kind of wish everyone stayed seated for the show, but I was able to put Colleen on my shoulders.

Day 2: Epcot

This was the visit I was so excited for Colleen for. Thankfully she was up early, and we got breakfast to go. I wanted to get to the park as early as possible so I could find Anna and Elsa. We got there right when the opened and I practically ran to get her to where they were supposed to be. When you get to the Norway part of Epcot, you go inside the shop, and when we were brought back to where they were, I may have gotten a little emotional (even right now as I write this.) Since Colleen is non-verbal, she can’t tell be how she feels, but the look on her face was absolutely priceless.

Showing Anna our shoes! They wanted to get a paid for Olaf!

After meeting the princesses, Colleen rode her next ride, Frozen Ever After, which happened to be water log flume ride. (Had to hide her hearing aids so the didn’t get wet!) Thankfully, not a lot of water, but I think she loved it.

Oddly, parts of the Epcot world were roped off beyond Norway, so we made our way to find lunch and then back to GKTW for her nap!

Part 2 coming soon!

Slight change of plans.

With final payment of Colleen’s stem cell therapy coming due, I made the decision on Wednesday to postpone Colleen’s treatment. Still being a bit short on covering the costs, I hadn’t heard back from the foundation I applied to help and I didn’t want to waste the doctor’s time either. I’m sad… I was looking forward to how this second would help. But, overall, I know it’s okay because I know it will happen eventually. Just want to wait a little longer.

To be honest, waiting is probably going to be a benefit as well, because September 4-10th is Colleen’s Make-a-Wish trip to Disney! She is slightly obsessed with Frozen and lately, she’s been intrigued my Moana. She is getting over strep throat, and was not happy at all. Frozen came to the rescue a few times and after one brief episode of being upset, Moana came on after the Frozen video and she was hooked. She even watched it at school. She’s finally expanding her Disney love. Haha. Based on her huge smile when the videos start, I can’t wait for her to see the Cinderella castle!

I’ve been browsing Instagram tags, but would love to hear what you recommend to do while at Disney! What would be fun rides for Colleen to do?

Seizure Response Dog?! & Make-a-wish

I’m at the inquiry stage of seeing if a seizure response dog would be beneficial for Colleen. Over the years, we’ve bought both the Embrace watch and Sami cam to help make sure Colleen is safe.

But, now that she is walking more and more at school at home, it’s still scary to think that at any moment, she could have a seizure or myoclonic jerk. That moment came last week when she had a myoclonic jerk right into her toy. With her face. Ugh..she was brought to urgent care since it looked like she might possible need stitches. Thankfully, the swelling went down and no stitches required. She was still left with a nasty black eye.

Thank goodness for frankincense essential oil! Waiting to hear back if a seizure response dog would be an option. I sincerely hope so, but it means we have to minimally fund $10,000 ourselves. I think we can do it! Also want to get her in for a second stem cell treatment!

In other news, Colleen was nominated for Make-a-wish! It’s still at the beginning stages for that as well, but I’m so excited to her. She decided that meeting Anna and Elsa at Disney would be her wish. I’ll keep you up to date when that will be happening!

Til next time,

Xoxo Jen