More on that later!
Wednesday, January 20, 2016
Hailey went to the ophthalmologist in December and received a new prescription for her glasses and then we were asked to come back 4 weeks later. The doctor did not get the result she had wanted and told us that with Hailey's progressive disease her prescription isn't keeping up with her sight.
She wants us to try and strengthen Hailey's "bad eye" by patching her "better" eye for about 2 months. It is only for 2 hours everyday and the one thing that makes it not so tough is that Hailey gets to pick from some pretty cute designs. The ones we bought her even have glitter! Who doesn't love glitter?! Hailey is such a go with the flow type of gal I'm so glad that she is a good sport and doesn't fight this new thing we just threw at her.
We were able to find these on Amazon and we were able to use some Amazon gift cards that were given to us. We really appreciated those gift cards to be able to use during this surprise expense.
January is almost over but there is one last thing that we must highlight this month...
Hailey's 1 year Pacemaker Anniversary!!
More on that later!
at 3:48 PM
Thursday, January 14, 2016
I just added a banner to the far right of the blog that will take you straight to the Hugs for Hailey Etsy shop! I've added a few new super cute necklaces and we've also reduced the prices on some of our "classic" pieces!! Be sure to check them out before they GONE! Last time most of these were sold before I even posted about them!!
These are our new Tsum Tsum Necklaces!!
These are our new Tsum Tsum Necklaces!!
Wednesday, January 13, 2016
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!
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.
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!
Fiona was Hailey's favorite I was told!
The Dragon. 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!
at 12:30 PM
Thursday, January 7, 2016
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!
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!
Then all of the sudden a cast member presented Hailey with this ticket!
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!
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!
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!
Wednesday, December 16, 2015
She is 7 years old and loves to smile and give hugs!
In 2012 Hailey was diagnosed with an unspecified type of Leukodystrophy, which is a terminal disease that affects the white matter in your brain. The white matter is the insulation around the nerves in your brain that allows communication from your brain to your body. Without white matter your brain cannot tell your body what to do and you slowly and painfully become unable to do things you were once able to do. Hailey was semi-vegetative for a year after she was diagnosed. She did not walk, talk, or even eat like she used to. She had a feeding tube placed in 2012 to provide her with the nutrition that she needed at that time.
In 2013 Hailey was granted a Make a Wish trip to Disneyworld and it was an amazing trip for our family. Not having to think about doctors, or saving up money to be able to pay for such a trip was a burden that was lifted. The smile that Hailey had the whole trip was priceless! She has always been a HUGE Disney fan and this was a trip we knew she’d LOVE!
Hailey always has a smile! It was such a memorable trip. Our whole wish story is on our blog.
The year after our Make a Wish trip we put together Team Hugs for Hailey and participated in the Walk for Wishes so that we could help raise money for other kids living in Southern Nevada that would soon get their wishes granted! Hailey was doing well and we put her in every therapy imaginable to help get her to regain her ability to walk, and she did after 13 months. She even crossed the finish line on her own after the 1 mile Walk (she did take a few breaks and we did use her wheelchair when she got too tired) She was so proud and we were so proud of her.
We were so happy to raise money to help grant the wishes of Make a Wish children in Las Vegas. Many of them we have become very good friends with. Lots of people think that once your child gets their wish your relationship ends with Make a Wish, but it doesn’t and we wanted to share all of the other experiences we’ve had through Make a Wish so we post often on our blog www.HugsforHailey.com or on Facebook at www.facebook.com/HugsforHailey or even instagram and twitter: @HugsForHailey
We were excited to participate again in 2015 but we received some news we were not expecting. In January of 2015 we were told that Hailey would need to have a Pacemaker placed immediately and we had to travel to Salt Lake City to have the surgery. Hailey would be on bedrest which would lead to a set back where she again lost the ability to walk for 6 very long weeks, but Hailey was determined to join in the Walk for Wishes in just a few months.
After spending some time in Salt Lake City recovering and then coming back home to Las Vegas, Hailey was ready to get our team together, but it was such short notice that it ended up just being a very small team.
We are ready to start off the new year with a new team and would LOVE anyone who would like to be on team Hugs for Hailey to join us this March as we again Walk for Wishes! To join our team you can sign up with this link:
If you have any questions please feel free to reach out to us on Facebook or you can email us at HugsforHailey@live.com
Thank you so much for taking the time for me to introduce you to Hailey.
at 3:25 PM
Wednesday, November 18, 2015
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.
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!