Tuesday, March 22, 2016

Pacemaker Anniversary

Can you believe it has already been a year that Hailey has had her Pacemaker?? The whole thing is very surreal to me. I still find it hard to believe that my 7 year old has a pacemaker. In reality everything about Hailey is surreal, the leukodystrophy, the g-tube, our story in general, but we try to always focus on the good and celebrate when we can. Even if it's something small. 

When we asked Hailey how we should celebrate this big milestone. I think I could have guessed what she would say. She wanted to go to her happy place. Disneyland!! So we did! 

As soon as we got there I had the idea to turn Hailey's Mickey Ears around so that people could see her name. Every single person addressed Hailey by her name and she was in awe that everyone KNEW who she was! (Her name anyhow) It was magic! She said, "all my friends her remember me!!" 
"Yes they do!!" I said. Wink Wink...

 When you find Peter and he tells us that we should go to Pixie Hollow cause the fairy's are waiting for us you go! 

Roger Rabbit was there for the Annual Passholders to get to see. Hailey didn't know who he was at first but soon became a fan. When she introduced me and her dad, Roger went wild when she said, "this is my mom Jessica!" it was really cute! 

 The highlight of the trip was getting to watch the Pixar Parade. Magically a lot of the characters in the parade were made aware that Hailey would be in the crowd and where she would be. Hailey got a few extra kisses blown her way and some high fives as well. It was such a fun experience for Hailey. She was so giddy with excitement and I love that she was so happy. 

Our favorite characters were the Incredibles. We love those guys so much!! 

 You can't go to Disneyland without stopping by the Character Close Up with Anna and Elsa and NOT get a group hug! Hailey loves these guys! 

 We were so lucky that Hailey found her friend Kaylee at Disneyland and was able to spend the morning together! Riding on rides with someone other then mom and dad just makes the ride more thrilling! 

Baymax was another Annual Passholder meet and greet. I was worried about this one. Baymax was so popular there was a line just to be able to strand in line to see him. So I decided I'd do that while Hailey and her dad went to the Frozen Sign a long and then had some snacks. Hailey just watched Big Hero 6 and was pretty excited for this rare opportunity. 

As you know there are not that many rides that Hailey can go on for one reason or another so character meet and greets are what she loves best! 

During DJ's dance party Hailey also made some friends with the dancers, and they were so great with her. They held her had so that she wouldn't fall since she was still a bit shaky on her own from her last ataxia episode, and then invited her to say goodnight to DJ in his garage! This was so special and we appreciated the invitation. Such a great way to end the night! I always say that the cast members mean so much to us by these little gestures and then when I talk to them they thank me for letting them do these things for Hailey. They find such joy in being able to help a child smile like Hailey does.

My sweet Hailey always making friends! She met another friend named Max while waiting for Anna and Elsa and she instantly had a connection with him! They watched the parade together and then rode Buzz Lightyear!! They ended the night by taking photos by the castle as it was lit up so beautifully! We appreciate Kaylee and Max for showing Hailey the extra love. Best Friends Forever!! 

 The actual celebration on the Pacemaker came when we had Breakfast with Minnie and friends! Hailey was too excited. Instead of chasing down characters they come to your table! So great! 

 When you ask Hailey where she wants to go to celebrate anything she will NEVER not say Disneyland and that's fine with me. She is so happy when she is there! It really does bring some magic to her. All the things others do for her mean the world to us! 

Happy 1 year Pacemaker anniversary!! Here is to many many more! 

P.s. We'll see you soon Disneyland!

Hailey goes to Nascar!

I've blogged many times about how Hailey LOVES pretty much anything race related! She had a blast at the NHRA races, she ADORES Tanner Foust and Scott Speed and cheers them on at the Rally Car races, and next on her list was being able to go to a NASCAR race! Make a Wish of Southern Nevada was given tickets to give out to wish families from Sprint. These were VIP tickets and we all got to watch the races from the Sprint Suite! All the people we meet that work for SprintCup were so nice to the kids. Each one even got a special swag bag of goodies! 

To prepare Hailey for what our adventure would be we took her down to her favorite chocolate factory, Ethel M! She was able to see the M&M race car that gets driven by Kyle Busch. She thought that was so great! An M&M race car!?

We took a couple photos with the Red M&M that was dressed up in his race outfit and in the background was Pit Boss from the Las Vegas Motor Speedway

When we told Kyle Busch that we went to see his car and wish him luck, he favorited our Tweet on Twitter! 

We couldn't tell cause we were in the Sprint Suite, but it was a cold and windy day in Las Vegas. Hailey made sure that her and her dad got as close as they could so they could watch the race and cheer on #18!!

 Before the race started we got to meet Miss Sprint Cup and Hailey thought her name was Miss Race Car Princess. Miss Sprint Cup was adorable with all the kids! She even asked if she could please have a photo with each of them which made them all feel super special. I loved that! 

 The kids were also visited by Darrell Waltrip who is a Hall of Fame race car driver that does the commentary for the Nascar Races. 

 Hailey and Miss Sprint Cup watched the race together and during the caution flags they would take selfies with my phone! So cute! 

Hailey cheered on #18 and in the end Kyle Busch won!!

We wanted to let NASCAR know how much fun we had with Make a Wish SNV, Sprint, and Darrell that when we did they replied to on tweet on twitter too! 

 It's pretty neat that just through social media we were able to introduce people to Hailey, and Leukodystrophy, and to Make a Wish SNV. It was such a fun day! 

A couple days later Hailey got something pretty neat in the mail! A signed box of chocolates from Kyle Busch thanking Hailey for being a fan! We hope we get to do that again! It was a lot of fun!! 

A Haircut and a donation

It was time for Hailey to get a haircut...according to her dad. I would personally always keep it super long. It is just easier to braid when it's long and one length, but Hailey agreed with her dad so we got a haircut. Not just a trim either! We chopped off 9 inches!!! 

Hailey had just read about Junie B Jones going to the beauty shop and she was thrilled she got to do something that Junie B got to do also. 
We made an appointment with our favorite beauty clinician and off we went!  
 Hailey did a great job. She got her hair washed, and her head massaged and she enjoyed a bit of Curious George on the iPhone. Hailey being the chatterbox that she is went on and on about our last trip to Disneyland and then just had general chit chat! After it was all done she loved her new look!

Thank you to Witney for always taking such good care of Hailey when she comes and sees you. I don't think it'll be another 2 years before we see you again though. I really like the length! 

I told Hailey that we were going to donate her hair to other kids that needed it. Hailey never says no to donating. We try to purge her toys every couple months and she never fights me. She always tells me about the kids who might get her toys. Love that she's good about it. 

We decided to donate to Children With Hair Loss and they thanked us on twitter for it!

 When Hailey saw herself in the mirror after getting her hair done she told me, 
"Mom! I look like I'm 10!!!"
Funny girl!