Gifts from Hailey's Grandparents

This past Christmas Hailey received 2 really fun gifts. From her Granny and Gramps (Her Great Grandparents) Hailey was given a gift card to Build a Bear and lunch date. I thought that instead of just holding on to the gift card and going back to Vegas that we would go to Build a Bear and take Granny and Gramps with us so that we could make some fun animals and some fun memories too! It worked out great! Even if it was a very cold, windy, wet day...I guess that's my part of the memory...LOL! 

 Picking which animals is always the toughest part! Even the animals you see pictured above were not the ones we ended up with. Ms. Hailey changed her mind MANY times before settling on the final product. She kept saying NEXT time I'll make those ones.

When we finally picked the right animals to stuff we got right to it. This is Hailey's favorite part! 

You must wash and fluff your animals and then take them to the dressing room for clothing. After that is all done you take them to get their birth certificates. 

Daddy and Gramps walked around the mall and left the girls to the action. Hailey LOVES Build a Bear so this gift and memory was PERFECT! Thank you Granny and Gramps!

The gift Hailey got from her Grandma and Grandpa was to get to go see Shrek the Musical at the Children's Theater. I don't know too many detail since it was just a day for them and Hailey, but from the photos it looked like a lot of fun!

Hailey was able to go backstage and meet the cast. They all signed Hailey's program and took photos with her!

Hailey LOVED the pink and purple! Thanks grandma and grandpa.

Giving Hailey a gift that was also a memory was such a great idea! She had lots of fun and spent some time with her grandparents and her great grandparents. I wanted to make sure that I blogged about it so that we can look back on it. We are all about making memories this year and this was a great way to start! 

Disneyland for Christmas!

We decided that the PERFECT Christmas gift for our little Disney enthusiast was a trip to her favorite magical place...Disneyland!! I'm not gonna lie, I really wanted to visit Disneyland at Christmas too, I've never been during that holiday! So we made plans and headed on down. To tell Hailey what her Christmas gift was, I made her a special present that she was able to open right before we left: 

You know me, I love an iron on!! 

We ended up having to leave our house so late in the day that we ended up arriving when it was already dark, but still wanting to head over to the park. Hailey said that she wanted to go on Heimlich's Chew-Chew-Train first so that's where we headed. No one was in line for the 20 second ride so we walked right on! Dad had to sit by himself, but Hailey assured him that next time he could sit by her and I'd sit by myself.

We simply can't go to California Adventure and NOT say hello to our favorite Queen and Princess at the Character Close up! No matter how many times we see Anna and Elsa, Hailey still gets star struck!

A special surprise was taking Hailey to see Santa Clause. Santa at Disneyland knows EVERYTHING. He knows your name, where you are from and even that you wrote him to tell him that you wanted Shopkins...Season 4 by the way! I love this photo of Hailey and Santa!

The next morning was pretty exciting! First we headed on over to Disneyland and while walking to It's a Small World, we found Alice and the Mad Hatter! We've never seen the both of them together so we just had to stop for a photo and autograph!

 We were so lucky to have met up with some of our good friends and leukodystrophy family during our trip. Katelynn's Butterfly Kisses Family showed up to spend a few hours with us that we filled with as many rides as we could. I love being able to meet up with anyone from Hunter's Hope. Love this family, and how I wish we could have met Katelynn before she passed away.

We had also planned to meet up with some of our new friends that took Hailey on a special adventure through Disneyland that was planned specifically for her. I knew it was going to so much fun for Hailey, but it ended up being a MAGICAL day for our girl!

During the Christmas Parade something pretty awesome happened. Jessie from Toy Story was in the parade and found Hailey in the crowd. She stopped, jumped off of the Army man jeep, and came over to kiss Hailey on the forehead!! We've never been able to meet Jessie and this was such a fun surprise. Jessie went above and beyond and Hailey couldn't stop talking about how her and Jessie are best friends now!

Last time we were at Disneyland we had ZERO luck in finding and taking a photo with Mickey Mouse. This time when we found Mickey he had 100% of Hailey's attention. It was so cute to see them interact and hug and when it came time for a photo Hailey insisted all her friends HAD to get in the picture too! This is a great group of people and they made Hailey's day one to remember for a long time!

After our day at Disneyland with our wonderful friends we had to say goodnight but Hailey didn't want the party to end. She wanted to go over to cars land because she said she didn't get to see McQueen and Mater yet. So we headed on over!

Hailey is NOT shy and I LOVE that about her. She likes to introduce herself, introduce mom, and introduce dad by telling everyone that he's 40!

While in line to say good night to McQueen one of his Pit Crew members stopped to talk to Hailey. Hailey started to tell her all about the terrific day we had. Hailey even told her that she has to relax a bit and use her wheelchair because her legs where tired and showed her new friend her AFOs. That led to us explaining a bit about Hailey and then Hailey invited the pit crew to learn more about Leukodystrophy by inviting them all to her Facebook page or as Hailey says "her dot com"

The pit crew had said that McQueen is ready to go back to his garage to go to sleep for the night but if we wanted to we could all walk with him. Hailey was so excited and then even more thrilled when McQueens Pit crew presented Hailey with a mini stuffed McQueen of her own!

As the park closed we strolled with McQueen and Hailey to his garage and the pit crew had told us that it is an extremely rare thing to take a photo with McQueen right outside the CARS ride Radiator Springs Racers (a ride Hailey would LOVE to go on but can't exactly handle right now, but one day she will be able to)
This was such a neat opportunity for us to be able to get to take this photo. It's another of my favorite memories that we were given, by the awesome Disneyland Cast members we've met! We thanked them all, gave out some hugs and also some Hugs for Hailey bracelets as a thank you and a reminder to them of when they made a little girl extremely happy!

The next day we had something very special and fun planned for Hailey. A very close friend of hers had given Hailey the gift of getting to go to the Bibbidi Bobbidi Boutique from Life With LOL : Lauren's Journey. We all miss Lauren so much that we all thought of her the whole time we were there. My eyes always had tears in them as Hailey was getting this fun treat. Thank you Lauren for your sweet gift!

Hailey's fairy godmother in training asked if this was Hailey's first time at the boutique and Hailey automatically said that she came for her Make a Wish when she was 4! Her fairy godmother had asked if she had this much hair when she was 4? I have to give this fairy godmother props for being able to tame this wild thick mane of Hailey's!!

Hailey could not stop smiling! She told everyone that her name is Hailey but she's dressed as Rapunzal!

 When we saw Rapunzal Hailey just had to say hello and show off her hair, nails, and dress to this fun princess!

Then all of the sudden a cast member presented Hailey with this ticket! 

 We were not planning on going to the Royal Hall to meet the other princesses but the ticket was given to us and invited us to go the the Fantasy Faire to do a private meet and greet! It was a wonderful surprise and again...tears from me. How thoughtful that someone would anonymously do this for Hailey! Thank you, who ever you are!

After Hailey's royal treatment I had said that I wanted to check out the Viva Navidad parade over at California Adventure. I am SO glad that we did! We LOVED this mini parade. The music just made you want to dance along. Since music is a huge therapy for Hailey I knew that she'd love it too! Hailey loves to Samba!

We were just in time for the Pixar Play Parade as well. If you guys remember, in October when we went to Mickey's Not So Scary Halloween we met awesome people at Monster's University. We gave one of our favorite MU Cheerleaders the heads up that Hailey would be in the crowd and where. When the MU Cheerleaders came near, Hailey started waving vigorously and low and behold we got the chance to say hello, shake some pom poms, and give a quick hug! It was so much fun for Hailey. She even told me that she LOVES all her new friends! It's such an incredibly special thing for Hailey to even just get a quick hello. We appreciate the time people take for these little opportunities!

 This next part of our story is a little confusing, but so much fun, so stay with me as I try to explain! We were at California Adventure after a LONG day and we decided to get some ice cream (even though it was cold Hailey's dad could eat ice cream in any weather). I get a text from Hailey's Aunt saying that her favorite artist, Artist Abe ,hid one of his drawings over at Disneyland and if we were near by she'd be SO SO SO Happy if we could get it for her. It wasn't just walking over and picking it up, it was figuring out where it's hidden from clues posted on Instagram. My little sister does a lot for us so I figured it would be something fun to do with Hailey for her. We high tailed it across the way to Disneyland and then got a text. The first art piece was found near Star Tours but there is still one more left. It's near Club 33...
I had no clue what that meant, and when I asked a cast member they didn't even know! (they were new) So after trying to get through the crowds with a child in a wheelchair we arrived at the spot, but we were too late! The drawing was gone!
I messaged my sister on Instagram and tagged the artist saying that we tried but we were too late and I even took a picture of us where it was supposed to have been hidden. We were so bummed we weren't able to do this little favor for my sister.
Then I get a message from Artist Abe inviting us to meet up with him so that he could give us another copy of the art that was hidden that we were looking for. He noticed that we really did try hard to get the print for Hailey's Aunt. We were so thankful for such a sweet offer. I ended up telling Hailey that we WON the scavenger hunt after all and she was all smiles.
When we met up with Abe he asked us if we live near by...only about 300 miles away. We told him that we come down often for Hailey since it's her very favorite place to be. Hailey even told him that she likes drawing too and he invited her to get a drawing of her own sketched up. Abe was extremely generous with his time and with Hailey. He wasn't in a hurry and he took his time to listen to her and asked her questions, like what's her favorite ride. She squealed, "SMALL WORLD!!" I told him that's just how she says it...every time! She could go on that ride 10 times and be just as excited the 11th time. We really want to thank Abe for his time and generosity with Hailey. He even posted and tagged Hailey in a photo and helped share our story. It was pretty incredible and in the end my little sister got her print from her favorite artist because of Hailey! Thank you ABE!!

 We had an incredible 3 1/2 days at Disneyland and it was a wonderful Christmas gift for all of us!

Every person we meet or have met becomes part of our memories and they are wonderful memories that I love sharing and blogging about so that we can look back on them. Thank you to all the Cast Members who go above and beyond. Thank you to our friend Kaylee who planned such a fun day with all her friends taking part. We loved the fun adventure that you had planned for Hailey!
Thank you to Artist Abe for being wonderful to Hailey and sharing our journey! Thank you to the Mason family for giving us these opportunities to take Hailey to Disneyland. We appreciate everyone so much it doesn't seem like THANK YOU is enough.

We love that each of you are a part of our story and are a part of our memories that we are making with Hailey!

Best. Christmas. EVER!

Thank you Ethel M

This year Hailey was invited to attend the lighting ceremony at the Cactus Gardens located at Ethel M Chocolate factory and it was so much fun to be included at this event. 

I wrote earlier how I wanted to plan lots of fun things for Hailey to get our minds off of the cardiologist appointment we had where we were told about Hailey's AV Block progressing and this event seemed like it was going to be a lot of fun! 

We saw our favorite m&m's and we also saw our favorite radio DJ, Mercedes. Hailey and her are BFFs and are have lots of fun together! 

After the event Ethel M gave Hailey a basket of chocolates to thank her for attending! YUM!!!

Thank you Ethel M for inviting Hailey and letting her be a part of this event. She enjoyed the face painting, Christmas songs, and the lights! We thank you for letting us make memories with our girl and hope to work with you in the future. 

Global Rally Cross - Tanner Foust's Biggest Fan

November is when the GRC Finale in Las Vegas takes place and one driver in particular has a special place in Hailey's heart...Tanner Foust! 

Hailey met Tanner 2 years ago when we were invited through Make a Wish Southern Nevada to be Tanner's special guests along with some other kiddos. When Hailey sees Tanner on tv she knows him right away from the autographed posters she has on her wall in her room. 

We didn't have tickets to this years race but I knew this was something Hailey would love to do again. The first time we went it really had a big impact on Hailey and really stuck with her. I had read on social media that Tanner Foust and Scott Speed (The drivers for Volkswagen) were going to be near by where Hailey has therapy and on a whim I decided to stop by after. 

We really don't go anywhere without Hailey making friends and this event was no different. As we stood in line Hailey was getting antsy, it was funny to see her excited for race car drivers. This little girl who loves, pink, frozen, and sparkles and she likes cars. She gets that from her dad. This is not a fluke or sudden thing either, remember how she wanted to go to the NHRA too?

As soon as Tanner saw Hailey walk up he knew her right away! He also could have suddenly remembered her because she was wearing her Hugs for Hailey shirt...wink wink...LOL! He did say that he remember her from the Make a Wish thing though and from our tweets on twitter. 

Of course there were lots of Hugs to give and to prove that Hugs make people happy check out the people in the background in the photo below. They are smiling just from seeing someone get a hug!! 

Hailey loves giving hugs and this hug was because she was given a brand new Tanner Foust t-shirt and she was thrilled!  

 At the meet and greet they had raffles and guess who one tickets to the races....????

 We were so excited to get to take Hailey again this year! 

 Hailey left the event with lots of SWAG! Autographs, tickets, hats, and shirts! 

 Look at this happy girl with her two favorite drivers! 

The day of the races came and Hailey was ready to go representing her driver! Then all the sudden...THUNDER STORM!!! It started pouring, and it was muddy, and so so so cold and windy but we bundled up because Hailey was over the moon excited to go! 

 Now these seats weren't like the VIP seats we had two years ago, and that's fine. These were out by the bleachers with no awning to keep away the rain, but Hailey did not care! In between races we went to the pits and made sure to wish our guys good luck. When we saw Scott Speed he actually invited us to get out of the rain and stand with his crew under the tent! What a great guy! 

 We actually did get great front row seats though. Hailey had to wear ear protection since she's become so much more sensitive to sound which is a common thing with Leukodystrophy kids. Hailey had smiles the WHOLE time and she'd cheer out loud and she really did love this. 

 I love seeing her so happy doing something where you could be crabby about the weather situation and being cold, wet, and muddy. Our happy girl! 

I like this photo. By the end of the races no one had to be reminded who this little race fan was. Everyone knew who Hailey was and that's pretty exciting. I wrote this before but I often think of it as being that: 

We don't take Hailey to meet celebrities, we let celebrities meet Hailey. 

Thank you to everyone who helped us get Hailey to this event. We really appreciate it. We will continue to make memories with our girl every chance we get! 

Celebrating Halloween all October LONG!

Hailey and I (Mom) really LOVE Halloween! This year we decided to take Hailey to Disneyland with our season passes and check out Mickey's Not So Scary Halloween. Combining two things we love, Halloween and Disneyland!! I think the first week in October was when we kicked off Halloween festivities and it really did last ALL month long! 

 Disneyland was amazing as always and being October it was HOT outside! It always takes us a few days to do Disneyland and we still never do everything we plan to do. We take LOTS of breaks and we can't be in that sun for long periods of time with Hailey, so often we take turns standing in line while the other parent is with Hailey in the shade or in the AC "shopping." This place puts Hailey in such a happy mood. She is giddy with everything she sees and does. 

 This was our first time checking out the Halloween Party at Disneyland and it was pretty incredible, but I have to be honest...There is absolutely NO way to do everything in the short amount of time you have. We really wanted to see characters but the lines were SO long that it's hard to wait in line for an hour for one character! We didn't even get to see Mickey Mouse! There was no way that we were going to get to see them all and that was a bummer, but we did our best taking turns in lines and luckily it cooled down at night so that Hailey could sit in her wheelchair and wait. I just think it's harder on a medically fragile child since there is so much more that goes into taking a child like Hailey. There is only 1 first aid station where we can take Hailey to change her diaper and going back and forth multiple times is exhausting and time consuming. So glad we have such a great relationship with the cast members that they see us struggling and offer to help. 

 Hailey could go to Disneyland everyday and never get board but we had to head back home because Halloween wasn't done yet...

 We planned different activities throughout the month and one activity we planned was making Halloween masks with Grandma. Hailey is all about sparkles and glitter and coincidentally so is grandma. 

 Pumpkin carving is out of the question so we put Mr. Potato Head parts in our pumpkins. Hailey thought that was a great idea and loved looking at her creation all month long! 

 I asked around to see where all the Free Halloween events were and Josh was nice enough to take us to each one we wanted to go to. There were a LOT! One event we went to Hailey got ANOTHER pumpkin and she was thrilled! We sure did get great use out of her Halloween costume! 

 Another activity I planned was Halloween treats. We had lots of fun making treats but we weren't going to eat any of them so we packed them up and gave them to Hailey's Therapists and they enjoyed them. 

Hailey's favorite event was one she was able to go to with her cousin. 

It's not Halloween without the Boo Bash at the Chocolate factory. What child doesn't LOVE trick or treating at a chocolate factory. Hailey loves m&m's! 

Hailey had a ton of fun the whole month of October and I was having fun dressing her up and seeing her smile. Yes I tend to go a bit overboard but why not? I don't mind it and Hailey loves it. It's all about memories! 

EEG & Cardiologist news

Hailey has been complaining about being dizzy at school so I made an appointment with the local neurologist and also an appointment in Utah with Hailey's cardiologist to check things out. 

We started off with the neurologist suggesting an EEG for Hailey. We haven't had one in 3 years so I suppose we were due. When Hailey had her MRI in January they checked on her "Grey Matter" and didn't find anything alarming.

 Hailey was fine if I was with her during the EEG but if I stepped away she'd start to cry so they let us bring the iPad and all was well as we watched Frozen! 

The EEG didn't show anything that would cause concern and the Neurologist suggested seeing the cardiologist so off to Utah we went! 

Going to Utah is a monthly event for us. I think November and December will be the only months that we will NOT be going to Utah. It's so expensive for us to board the dogs, spend the gas money, and then pay for a hotel and eating out, but we do what we have to do. 

First they did a quick EKG which isn't very quick because it is so difficult for Hailey to stay perfectly still and breath normal. If we tell her to stay still she tends to hold her breath...LOL!

After the EKG they hooked up the pacemaker monitor and did some readings and the cardiologist was not pleased. 

When we first had Hailey's pacemaker placed it was because her left ventricle was sporadically not completing beats which caused her to be below normal at 59 beats per minute when 60 is as low as she should go. The pacemaker makes up when needed. She was having 2nd degree heart block. All of the sudden we are now being told that Hailey is "Pacing" all the time. Hailey is now in Complete AV (Atrioventricular) Heart Block Disease. Her left ventricle does not have a strong enough underling heart beat that the pacemaker is doing ALL the work. This is a very fast progression of this disease. Hailey's brain is having a hard time sending that message to her heart. 

This is breaking MY heart. I'm usually always in the realm of Hailey's Brain, but now we need to focus on Hailey's Heart. The cardiologist told us that when we see Hailey ataxic and lethargic we need to get Hailey to a hospital so they can check on her heart and make sure the pacemaker is doing what it needs to.  It has certain settings in place. Usually Hailey being tired or lethargic is Leukodystrophy and we just let her be because that's what happens, now we have to take a few extra steps to make sure Hailey is alright. We hate having to go to hospitals but I did hear that if you are there for a heart issue you get to cut the line..?

The cardiologist doesn't want us to limit activities with Hailey because this is about Hailey's quality of life. I think I went into over drive hearing this and planned SO many activities for Hailey. I don't want to think about the bad stuff too much. I just want to enjoy Hailey and have her do fun things so she has memories of that instead of memories of doctors and hospitals. 

Looking at Hailey she looks perfect and she is perfect in our eyes but this stuff is pretty scary and I need to remind myself that we knew this might of been something that was going to happen. The cardiologist reminded me of this but then added, "We just didn't think this would have happened SO fast!"

So that's our news as of right now. The dizzy spells might be a brain thing and it might be a heart thing, but it could also be an inner ear thing or just a random thing. We never seem to get the answers to our original question and we end up with more questions in the end. We were going to see the cardiologist every year after this appointment, but now we will continue to see her every 6 months with over the phone pacemaker transmissions every 3 months instead of every 6.

For now we will keep on doing fun things for our girl and make some extra exciting memories. Some that we've already done that you can check out on our Facebook page! 

New Necklaces in our Etsy Shop!

 We have added a WHOLE bunch of necklaces to our shop!! We will be using the money raised to enroll Hailey into HippoTherapy. Hippo Therapy is therapy on horseback. We've been off for a very long time while Hailey recovered from her pacemaker surgery. 

We got the go ahead and we are crossing our fingers we can attend this session that starts this month! 

Take a look at which ones we have and now we've even lowered the prices!! We have LOTS of new ones and we are excited to send these out!