Tuesday, December 23, 2014

Sweet Gesture

A few weeks ago I get a message on Hailey's Facebook page from a mom who wanted to let me know her daughter wrote a letter to Santa asking him to bring Hailey some Shopkins Season 2. In Las Vegas these are extremely hard to come by and it's all Hailey has been talking about. I thought this gesture was the sweetest thing to be done by one of Hailey's peers. Here is the letter to Santa that was delivered by Santa's Elf named Wink. 

Dear Santa, 
A girl named Hailey is very sick and she loves Shopkins. I was wondering if you could get her some Season 2 Shopkins. 
Love, Kenndy

How simply adorable is that? This little girl is thinking of Hailey and writing to Santa on her behalf. My heart swelled with happiness and my eyes were filled with tears. What a giving heart sweet Kennedy has. She is going to grow up to do wonderful things. After Kennedy mailed her letter, she received a response from Santa and Wink. 
Dear Kennedy, 
Such a kind heart you have. Santa and I were thrilled by your warm request. On behalf of us in the North Pole Miss Hailey will not be forgotten. Please mail this to her in your name. Thanks for keeping the magic of Christmas alive. Love your elf Wink. 

We received the package and put it under the tree. We can NOT wait to see the joy in Hailey's smile when she sees what has been done for her. She may not fully understand the gift as a whole but we do and we are VERY touched. 

Thank you Kennedy for you sweet gesture for our daughter. You will put a smile on her face for Christmas! 

Friday, December 5, 2014

My Daughter's Heart...

My daughter Hailey has a heart of gold! She is loving and compassionate. My daughter's heart is warm, thoughtful and amazing. To look at Hailey you'd say, "She's doing SO well!" I've heard that about 10 times this week and that makes the news I am about to share harder to say.

I received a phone call from Hailey's cardiologist regarding her holter monitor results from a few weeks ago. Hailey was in therapy and the waiting room was empty and it was cold outside so I answered the phone expecting the same results we hear every 6 months, that we will continue to monitor Hailey's 2nd degree heart block.

That wasn't the news I received. The cardiologist said, Mrs. Gaston, I really think it's time to place a pace maker on Hailey's heart. She has gone from a 2nd degree heart block to a complete heart block in 6 months. Her heart stops beating several times throughout the day. This needs to be done within the next few months.

I think MY heart stopped beating for a moment. I felt this heat come over me and I felt when my heart started beating again. I felt a jolt. I didn't want to start crying just in case Hailey came out early but I kept blinking back my tears.

My daughter's heart isn't working. My daughter's heart needs help.

She's had surgeries before and they have all set her back and she has regressed with each one. The last time she had surgery it was like all her symptoms of Leukodystrophy fast forwarded. She stopped talking, walking, she couldn't even lift her arm to scratch her nose, she couldn't swallow.

There is a lot that went through my head. We'll have to set up "Home" in Salt Lake City for a bit. Hailey will miss a lot of school. Recovery may be difficult if we have to stop all her therapies. It'll be SO cold in Salt Lake, there is a risk of infection. Hailey will have her arm in a sling to restrict movement on her left side. She'll be scared, confused, and in PAIN and I don't want that for her!

I know I should take Josh's advice and don't think about what you MIGHT have to worry about. Worry about what you need to when it's time. He keeps me calm.

With Christmas coming up and more people that will see Hailey I know they will say, "Look how great she's doing!" and I will nod and agree, but I will look at her heart and know that not all is well with Hailey.

I love Hailey's heart, it's better then my heart and while I may be over emotional over a simple procedure that will hopefully provide a "less dangerous" life for Hailey, it is a lot for me to process. I always try and tell myself, "it could be so much worse!" to try and get past the "why Hailey?" Even now knowing that Hailey's heart has the complete block we've been thankful we haven't seen some of the symptoms of a heart block. But it also makes believing Hailey's heart having issues is real.

A lot has happened this year and so many things have been so WONDERFUL that I need to try to roll with the punches. I'll give Hailey what she needs, I'll be there after the surgery, I'll be there through her recovery. I'll learn how to care for her with a pace maker on her heart even though I don't think I have any more room in my brain to learn anything else. It almost feels as if my life changes as soon as I get comfortable with where Hailey is at, so I don't know why I'm so surprised.

In the mean time while we wait on more information about when this will take place questions that the cardiologist needs to ask a neurologist will need to happen and then we will have to weigh the pros and cons. I'm thinking Hailey will need an MRI soon. Ultimately I'm not in charge. Yes we can say if we want the surgery or not, but that doesn't really seem like a question. If my daughter's heart needs help and surgery can help, then we do the surgery. I know PCMC is a good hospital and her team of medical staff is great and she'll be in good hands, but it will always be difficult to hand my daughter over.

We will keep everyone up to date with new news as it comes in. In the mean time we have Christmas to get ready for! Hailey loves Christmas music and Christmas lights and we are excited to get to share those things with her.

As always I am thankful to those who read this blog and hear my thoughts and offer support. It's still odd to me that this blog started out as my diary and only I knew my thoughts. Now that it's open to the world and I'm sharing all of this with all of you I don't feel as lonely. I appreciate that even if I don't always say it.

When I get emotional and teary I think back to when we were in Salt Lake in 2012 and the Neurologist told us about Leukodystrophy and how it was terminal and how I constantly cried, Hailey would grab my hand and say, "mommy, don't cry! Be happy like ME!" She is such a smart girl with a beautiful heart!

I love my daughter's heart!

Tuesday, December 2, 2014

Giving Tuesday

Today is giving Tuesday. What is Giving Tuesday? We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. On Tuesday, December 2, 2014, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.

It’s a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something more. I've listed just a few organizations that are close to our hearts that are a part of our lives and that have helped our daughter, Hailey, in more ways then one. 
I've talked about all the wonderful events that Make a Wish puts on for the Wish Families. I've told you how much I felt loved and welcome with Hunter's Hope and the research and help they provide to Leukodystrophy families. You read about our stay at Give Kids the World and you see photos weekly of Hailey at horse therapy at Spirit. Who could forget the wonderful birthday cake she was given from Icing Smiles? I really loved the pictures from the Peach Party we attended! Who would have thought that Hailey could smile even bigger when she saw her Frozen shoes? 
I really wanted to go into depth with each one but since I've blogged in detail I feel as if it would be redundant. If you are planning on giving, consider 1 or all of these great organizations that help families and children forget for a moment the cards life has dealt them. They have helped us to #MakeMemories with Hailey and I can't thank them enough!! 
You can follow the links to the donation pages of each organization and you can even donate in Hailey's honor: 

Together let's celebrate #GivingTuesday

Monday, December 1, 2014

DoTerra Essential Oils December Promotion!!!

This month is the month where more wellness advocates sign up then any other! It has officially been 1 year since I signed up to be a Wellness Advocate for DoTerra Essential oils. I have told the story of how I found doTERRA but a quick recap is:

I had brought Hailey home from Primary Childrens after her g-tube surgery in October 2012. I went to a craft fair in February of 2013 to sell our Hugs for Hailey necklaces and a woman came up to me asked me about Hailey and she took a pamphlet I had put together. About 2 hours later with tears in her eyes she gave me a full sized Frankincense Essential Oil. She told me to use it on my family. Just a drop or 2 with fractionated coconut oil on the bottoms of our feet and the back of our neck.
I took my time to read about Frankincense and how it's been around FOREVER, what are it's common uses, and how it's a bit expensive to get the CPTG (certified pure therapeutic grade). I wanted to continue to use this oil but I could NOT freely spend $93.00
I was told that if I signed up to be a wellness advocate I would only have to spend $69.75 BUT I also learned that I could earn points through promotional items and sales and I could get the Frankincense for FREE! Now we are talking!

So last December I spoke to one of the lady's who have been with doTERRA for YEARS and she was kind enough to gift me a membership and a kit to be a wellness advocate which came with points to start me out getting free items after 3 months. Last year the promotion that ran is the same one that I thought was a great deal. You sign up to be a wellness advocate and choose a kit. There are many to choose from but the 2 I looked at were these ones: 

With the Family Physician kit you get the most popular oils and then since you need a product value of 200 or 200PV you can add the oils that you REALLY want to get that remaining PV. The Family Physician Kit is 110 PV so if you look at the doTERRA price list you can add another 90PV to your order and you will get a FREE Frankincense!!!!

For example you can get the:
Family Physician Kit with 11 oils for 110 PV 
Cedar wood for 13 PV 15ml bottle
Eucalyptus for 14 PV 15ml bottle
Clove for 14 PV 15ml bottle
Vetiver for 34.50 PV 15ml bottle
Fennel for 15 PV for 15ml bottle
That'll get you to 200 PV and you'll get a free Frankincense with your order. But you can TOTALLY order which ever oils you would like to order. The list of oils and their uses are located HERE

If you want an enrollment kit that has your 200 PV already planned out for you then you can get this kit which I also love because of the diffuser: 

It's all the most popular oils and all but one come in the 15ml bottles. With this kit you will get a free Frankincense!! 

Being that it's cyber Monday I thought this deal was a really good one. If you don't want to sell doTERRA products but you want to use them and pay a discounted price (like me) then this month is a great month to sign up with the FREE Frankincense offer. 

To sign up simply visit my site www.mydoterra.com/HugsforHailey and fill out this form

If you want further information you can always email me and ask!! 


Thursday, November 20, 2014

Peach's Neet Feet & Zappos Carnival

There are so many kind, generous, and talented people that want to make a difference in someone's life. A life that may be difficult, discouraging, painful or unfair. We were able to meet a few people that put smiles on kids faces. Kids fighting a serious illness or living with a disability. Kids like Hailey. When I saw that Peach's Neet Feet would be coming to Las Vegas and joining Zappos.com for a carnival to celebrate others, I knew I wanted Hailey to be a part of it. Being kind is Hailey. I've blogged about it before, but it really does amaze me that Hailey loves others. She doesn't care what you look like, if you are in a wheelchair, or how old you are. Hailey will gladly say hello to you with a big smile.

Peach’s Neet Feet is a random acts of kindness based, non-profit organization that provides custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. 

I filled out an application for Hailey and then later I had found out that Hailey will be presented with her shoes at the event. We actually had a cardiology appointment in Utah that SAME day! We headed down to Utah the night before, had our appointment, placed Hailey's Holter Monitor, and booked it back in time for the carnival.

Once we got there we met Peach and she told Hailey that she wanted her to meet someone special. That someone special was the artist that painted Hailey's shoes, Alissa.

Here is how the meeting went: 

Introductions. Hailey this is Alissa. Nice to meet you! They talked about Hailey's favorite color, Pink and what was Hailey's favorite thing, Frozen (Anna, Elsa, and Olaf)
When Alissa pulled out Pink Converse shoes that had Anna, Elsa, and Olaf painted on it there was this HUGE smile that came to Hailey's face! 

Hailey couldn't wait to get those shoes on her feet. Well...over her AFO's! LOL! 
Peach and Alissa both helped Hailey put on her new Frozen shoes! 

Hailey was so excited for this gift and I was so Thankful to Alissa, Peach, and the Mayo family (who donated the shoes to be painted)  for the smile on Hailey's face. Hailey gives hugs all the time, but she really embraced Alissa with love for sharing her talent and giving Hailey something so personal. I LOVE this photo!! 

Here is a close up of Hailey's shoes. Aren't they amazing?! So much detail on such a small space. Alissa is a truly talented artist. She even incorporated the blue Leukodystrophy awareness ribbon. To top it all off the shoes even SPARKLE!!!! I can not stop raving about these shoes! I love that Hailey gets complimented on these shoes and that we can share Peach's story with others! 

To thank Peach for the awesome job she does we gave her a Hugs for Hailey shirt that she opened at the carnival. 

Hailey said that Peach was her new friend!Since this carnival was to celebrate others anyone who wanted to go was invited. An open invitation. This wasn't your run of the mill carnival either. Every child that came was given a FREE PAIR of SHOES from Zappos.com EVERY CHILD!! Isn't that amazing?! I thought that when I invited people to come to this event they would jump on the chance and be grateful for the invitation. What I didn't expect was people to ask me what the "catch" was? There was no catch! Is it really that hard to accept that this is done out of kindness? I was discouraged when I asked others to share and spread the word about the carnival and I would get a "pass" on it. I was shocked when I asked Hailey's school to invite all the kids to come down and have fun and also get a free pair of shoes and they declined as well. I simply had a hard time knowing that something so great was available to kids who probably could really use this carnival were denied the invitation. I had to get over that though. There was nothing more I could do. If I couldn't get my own "friends" to come to this I shouldn't be surprised I couldn't get strangers to come. Those who didn't come to the carnival really missed out on some great fun! Here is a brief recap:

Zappos headquarters was turned into an amazing kid friendly space that included, carnival games, arts and crafts, a petting zoo, a bounce house, and lots of food and goodies! Hailey invited her cousin to come along and my sister and my mom went also. Hailey and her cousin played every carnival game with great enthusiasm! They cheered each other on! 

The girls are sporting capes they were given by Jill who donated a cape to each child for the event!  The capes say, "Born to be Awesome!" 

Next station that we visited was a paint/decorate your own cookie. The cookie had a picture printed on it and you took edible markers to decorate it. Hailey found this to be something so amazing and odd. I kept saying, "Yes you ARE allowed to color on these cookies." Thank you to Wicked Good Cookies for this great activity. The cookies were SO yummy! 

There were also pillow cases that the kids could color and take home! 

We met Shannon and she was so great to help Hailey with her pillowcase! Thanks Shannon! 

The petting zoo was another hit with Hailey. This kid LOVES animals and this duck was Hailey's buddy following her around. 

There was a stained glass art station. Hailey grabbed for the pink paint first...of course!

We also met the person responsible for the other half of this carnival. We got to meet Dana with Zappos and we got to thank her for being a part of this and helping with getting every kid a pair of shoes! Zappos does a whole lot for the city of Las Vegas. They are an amazing company. Dana, it was so great to meet you! We hope that we can stay in touch! THANK YOU!! 

Since Hailey can not do bounce houses for obvious reasons we always give her a choice. Bounce house or face painting. We know she can NOT resist a good face painting so it ALWAYS wins and she feels as if SHE is making the choice. She got a FROZEN theme face! She loved it! 

It was like the cotton candy was on steroids!! It was huge! I am a big fan of cotton candy. 
**Side note: I love cotton candy so much I had it at my wedding reception! 
My love for it must be genetic! 

My mom had a great time with the girls coloring MORE cookies! 

At night when we got home I told Hailey it was time for bed, and time to put on pajamas. She stuck her tongue out at me, held her legs, and told me that she was NOT taking off her Frozen shoes. She wanted to sleep with her shoes on. It took some work but I did get her ready for bed with the promise that she'd get to wear her shoes first thing in the morning. 

Along with all the activities that there were for the kids they also got prizes at every carnival game and a goodie bag FILLED with fun things to take home! 

I thought this was a pretty cute prop! All the kids got to take a photo with it! 

Another awesome gift given to Hailey was this blanket from Binkeez for Comfort. It is amazingly soft and perfect! Thank you Binkeez!

As you can see we had the most fun time with Peach's Neet Feet and Zappos.com They did an amazing job putting this all together and opening their hearts to these kids. Hailey didn't stop smiling...(until it was time for bed) If you can or want to help any of these great organizations please do so. I've linked to the companies Facebook pages if I had them. You can always get more information on the Peach's Neet Feet website as well! If you're an artist or if you would like to purchase the shoes for a child check out her site!

Thank you to ALL involved, the organizers, the volunteers, those who donated and the other families we got to meet! 

Sunday, November 16, 2014

Hailey meets the Thunderbirds

Hailey was invited with a few other Wish Families to see the Thunderbirds in a private show a day before the Air Show would be open to the public. We were told to bring hearing protection because those jets are LOUD. It is no joke! I had no idea where to get something that would work for Hailey. I ended up going to a sporting goods store and buying a pair of ear protection head phones that were located in the hunting section. They fit Hailey great and she didn't get startled at any of the noise.

All the wish families met up down the road from the air show and we all piled up in a bus to be transported on base. We were even given a police escort, I thought it was great to show these kids how special they are. Not everyone gets an escort on to the base.

Once there we were taken to a VIP tent where the kids were given Thunderbird pins to wear on their shirts, stickers, coloring books, and a program to be signed by the 12 pilots flying that day.
 Hailey is an honorary Thunderbird! 

 Getting all these goodies sure did put a smile on Hailey's face! 

 It's November and it was in the 90's for temperature! It was warm. You can see Hailey's pink cheeks. We had to keep this kid hydrated. 
 She loved looking at her pin. She showed everyone standing around. 

 As the pilots drove by they waved to all the kids! 

The air show was amazing. The things they can do with these planes is amazing! Not only do they have formations that they do they also demonstrate how they can make a jet creep by so slow and low to the ground. It really was so neat to see! We really enjoyed ourselves! 

Once the pilots were done they all came to the VIP tent and took time for each child to find out a little bit about them. They asked Hailey's name, how old she was, and if she liked the show. Hailey said that her favorite part was when they made a heart in the sky. 
 There was so much she wanted to tell each pilot and they were so generous with their time. 

 The pilot you see below had an American flag that he took up with him in his jet for the show. He presented it to Hailey and she gave him a huge hug and thank you! 
 She loved getting autographs!

 The pilots each showed Hailey which one was their jet.
 There was even a pilot that had the number on his uniform embroidered upside down because he spends a lot of time in the sky inverted. Pretty Neat. 

 Hailey made sure she told everyone her name and thank you. 
 Big smiles all around! 

 Hailey loved seeing the "girl" pilot! She was the only female that flew a jet that day and Hailey asked her all kinds of questions....Like if her favorite movie was Frozen...inquiring minds!

Thank you to the Thunderbirds and thank you to Make a Wish Southern Nevada for always thinking of ways to get the wish families together to make more memories. We had a great time and everyone was so nice. I'm sure all the kids had as much fun as Hailey did!

Friday, November 7, 2014

Halloween and the Grand Canyon

We were all very excited when we got the news that our friends from Canada would be visiting us on Halloween! We were seriously thrilled for the fun that we were going to have. It started off on Halloween. We took the girls to do some trick or treating at a chocolate factory that was by invite only. First stop was to take some pictures with some GIANT m&m's.

 Then it was time to play some games. Hailey would go first and introduce herself by saying, "I'm Hailey, I brought my Lauren. Say hi to her!"
It was really cute! 
 Hailey always made sure that Lauren was included and got a turn. 
 There were a lot of games to play and win or lose you get a full size chocolate bar! 
 Hailey also cheered Lauren on at each game and clapped for her friend. 
 While there we ran into Hailey's Grandma! Lots of fun! 

 Next up was getting faces painted. You know how much Hailey LOVES to get her face painted. 

 Then it was Lauren's turn! 
 We got more chocolate in 2 hours then we could possibly eat in a year! I think it was close to 28 pounds of chocolate! I know! Crazy! 

 Once we got home and looked through all the loot we went and had dinner and planned for our upcoming ROAD TRIP!!! 

We packed up the car the next day, and headed 4 1/2 hours away to Arizona so that we could cross off an item on the girl's bucket list: The Grand Canyon. 
One really neat thing that Josh discovered is that you can get an entrance pass for free if you are a person with a permanent physical disability, a citizen of the United States, and if you have a signed letter from your physician. I had all my documents ready and turned them in so we could get Hailey her pass. It was very easy and now we can take her to any park that charges an entrance fee at NO cost! More information can be found online
 The view from our room was AMAZING!! It was like camping with a luxurious twist....warmth! 
 It was FREEZING!! I thought we'd be okay with just a light jacket, but I should have brought a parka! I didn't have a blanket for Hailey so I grabbed one from the hotel and used that to bundle her up. Once we got to the visitors center the canyon was a few steps away. In my opinion it was very odd to think how close we were to it the WHOLE time. It was so picturesque. It almost looked like we were on a green screen set. Hailey loved the colors! 
 She loved sharing this with Lauren. 

 I loved that one of my closest friends was there with me to experience this for the fist time. It was such an amazing place. At the Canyon they have shuttles that take you to many points around the canyon. I had made arrangements with a park ranger to allow us to take our own vehicle on the road for shuttles only. It was great to be able to pick and choose which points we got out of and which we skipped. No waiting for shuttles to have to put both girls of the handicap lifts over and over. 

 The Grand Canyon has been checked off of Hailey's list!! CHECK!! 

 Hailey was ALWAYS by Laurens side. I love how much Hailey LOVES Lauren. Hailey even says she knows what Lauren wants or needs. Every time we stopped you hear Hailey say, "Lauren, we are here!!!" and what's funny is that Hailey changes her voice. Hailey becomes very motherly and sweet.

 Hailey got to have a moment with her dad to take in the view. It was very special. 
 Isn't it amazing!? This was taken with my phone! 
 There were a couple of points where some of us would get out of the van to take a quick photo and the girls stayed inside. It just got colder and colder! 

 Another thing we arranged was for the girls to take an oath and to be sworn in as Jr. Park Rangers! It was SO adorable!  When they got done taking their oath the people who stood around us all clapped for the girls! Amazing! 
 Park Ranger Marty was more then happy to take some photos to help us mark the occasion! Thank you Marty! 

 Hailey was so proud of Lauren that she had to give Lauren a kiss of congratulations! 
 My Jr. Park Ranger. Hailey was very proud to show everyone her badge! 

This was such an awesome trip. I think we all had an amazing time. Thank you to Lauren's parents for coming along with us and I want to thank Josh for getting the info on the park pass and taking care of the hotel and the driving. These memories that we are making with our kids means so much to us. We are very grateful we have these opportunities to do so!!

Thursday, October 16, 2014

The Little Mermaid - Take 2

So in August when we had taken Hailey to see the Little Mermaid in Tuachaun we got rained out and they exchanged our tickets for another show. We decided to go on Columbus day after Hailey got home from school. We weren't going to stay the night so it would be a quick trip!

The show was a lot of fun! Even more fun if you are not drenched in the middle of intermission looking for shelter in your $3.00 poncho. 

After the show Hailey was Hailey to meet and greet ALL the actors in the show and she even got them to all sign her ticket. That was her favorite part. She loves to get autographs! 

 The stars of the show Ariel and Prince Eric! We sat second row and during the bows Hailey blew Ariel and Kiss and Ariel blew on back! Hailey was giddy! Ariel even brought it up when they met.
 A hug for Hailey!! 

Prince Eric was pretty dreamy!  

Ursula the Sea Witch was one of Hailey's favorites because she's purple!  

It was a great show and we had lots of fun seeing how happy Hailey was. I love being able to do these things with her. The more memories the better!! 

Tuesday, October 7, 2014

Student of the Month for October 2014

We were so happy to hear that Hailey was chosen to be Student of the Month at school. For a child who absolutely LOVES school this was a big treat for her. 

Her teacher gave us a Super Student poster to fill out together and that was also a lot of fun. It will hang in her classroom all month long! 

Some of the highlights were: 

  • Curious George and Fancy Nancy are some of Hailey's favorite books
  • When asked who was her hero she named her Leukodystrophy friends we met in Buffalo this year.
  • The symbol that represents her Super Power is the Blue Leukodystrophy awareness ribbon
  • What Hailey LOVES to talk about? Being a Make a Wish Kid! 
  • Favorite thing to do? Sing "Let it Go"
  • If she could make a wrong in the world right, it would be NO more sick kids!! 
Congratulations Hailey! We are so proud of you and how hard you work at school. We know how much you love being with your friends and learning new things! 

Monday, September 22, 2014

A new experience for Hailey

Josh had a great idea to share one of his favorite Las Vegas attractions with Hailey Saturday night. We headed out to the Bellagio to watch the fountain show. 

It's a great free thing to do. The song that played was, "Lucy in the Sky." Hailey was expecting a song from Frozen...Ha! 

Also at the Bellagio they have their gardens open to the public. They had some pretty huge pumpkins displayed. Anywhere from 600 - 1000 pounds.

I found these tree sculptures to be so amazing! Hailey wasn't a fan at first, but I told her to look at them smiling. I told her they weren't mean trees. There was one that blinked and talked. She was holding on pretty tight with that one.

I wish I was talented enough to produce something like this! 

I'm glad I asked to get a photo of us. I'm never in the photos! 

There was a wedding party walking through the gardens and one of the groomsmen found Hailey walking around and offered her a bouquet of flowers that were PINK!! Hailey was thrilled! We said thank you and gave him a card to our website. I love how Hailey makes these connections with her personality. The flowers were beautiful. 

Dad, Hailey, and Mom. It was nice to be able to get out of the house and do something new for Hailey. Show her things that are right in our backyard. I even showed her the Eiffel Tower across the way. I tried to teach her to say "Bonjour!" We can pretend that we are in Paris. I remember before Hailey was sick and all the plans I had for my child when she grew up. I thought to myself an awesome graduation from High School gift would be to go to Paris to see the Eiffel Tower. Something I've always wanted to do and I would love to share that experience with her. I kinda also want to go to Euro Disney...
Even if that dream is close to impossible, I still won't give up on that goal. Hailey I promise to try and take you to Paris with me one day. Maybe even before you graduate high school. 

We love you Hailey! 

Friday, September 5, 2014

First day of school - 1st Grade

Hailey is officailly a 1st grader! She was so excited to go back to school and better yet to ride the bus to and from home.
This year Hailey will have adaptive PE along with Music, Art, Physical, Speech, and occupational therapy. I can't forget Hailey's new favorite Library. She will also be taken out of her self contained special needs classroom and placed in general ed for reading comprehension. I know it may be difficult for her but I know she can do it and how ever it turns out, if she excels or not I'll be proud of her for trying. 

Nothing about working with the school district has been easy for me. I had fought for so long to finally get Hailey what she needs and what she is entitled to. This year she will have her same 1 on 1 aide to help with all her needs. They even have a walker in the class so that Hailey can move from class to specials and back and not depend on her wheelchair. Her wheelchair is there as a backup. She can get tired so easily. She comes home and I ask her a bunch of questions about school. I have her aide write down some details so that I can encourage Hailey to tell me about her day. 

At night after therapy and appointments her and I do homework together. She does fight me, but we work together and make a good team. I'm excited to see what she will learn and all the friends she will make.
Have fun my big 1st grader!!

Thursday, August 28, 2014

3 month trip to Utah. Here is an update

This past week we had went to Utah for Hailey's Rehab Doctor appointment. We go to Utah because there is not a pediatric rehab doctor in Las Vegas. The Rehab doctor manages Hailey's Baclofen medication and she is the one that would administrate Botox in Hailey's calves if needed. When we go we are traveling out of state, and staying in a hotel. Our insurance doesn't help with this cost.  Hailey hasn't needed botox in over a year but she has needed Baclofen. 
Here is what Baclofen medication does: 

Baclofen is used for treating spasm of skeletal muscles, muscle clonus, rigidity, and pain caused by disorders such as multiple sclerosis or Leukodystrophy. It is also injected into the spinal cord (intrathecal) for management of severe spasticity.

This doctor also manages Hailey's AFO's (Ankle Foot Orthotics) In the past we did try to have her AFO's done in Las Vegas and they were done incorrectly EVERY SINGLE TIME! That was unacceptable so the Rehab Doctor handles that as well as the physical therapist in Utah. The last pair of AFO's ended up stretching at the block (the block helps Hailey to NOT hyper extend her leg) this was the 2nd pair that did this. We finally picked up a pair that will help this to not happen again...hopefully.

At the appointment the Rehab Doctor was very impressed to see Hailey doing SO well. Again she took a video to show the neurologist in Salt Lake. I finally had spoken up to let her know that I feel as if the Neurologist in Salt Lake has lost interest in Hailey and her case. I feel as if he is telling me, Your child has a terminal disease, nothing you can do, have a nice rest of your life. Of course he has never said those words to me this is just how I am feeling. I do want her to report what I say to him. I don't feel as if he has listened to my concerns or questions. 

When the doctor and the physical therapist put Hailey's new AFO's on you could really see the difference in her walk. Right now, until she gets used to it, her walking is a little unlevel and she has a very wide gate to be balanced. When she uses her walker she does a lot better. When she walks without her AFO's and without her walker she is VERY unsteady, has a very wide gait, and I feel as if I'm playing catch. She doesn't stay upright for very long without them. These are a very necessary piece of medical equipment. 

During the appointment the doctor really stretches and sees what Hailey's range of motion is. I remember the first time we had went to this appointment and Hailey was SO stiff and she would scream and I hated watching her struggle. Today is so different from 2 years ago. Hailey's range has improved so much. Hailey works so hard in physical therapy and when she goes to horse therapy. We can see a difference.
You can't go to the doctor without getting a prize, but this time I had a VERY special prize for Hailey. Hailey loves My Little Pony and she loves blind bags. Something about not know which pony you're going to get is very thrilling to Hailey. There are toys called Fash'ems. For the most part you can purchase these at a store called Justice, but our store NEVER has these available and when they do they are $5 each when they are on sale!
I happen to have 2 Fash'em capsules in my purse just for Hailey. When I gave them to her for being a good patient the smile on her face was priceless! 

Such a little toy that brings such a BIG smile to my girl. The surprises didn't stop there! After the appointment I surprised Hailey with tickets to see The Little Mermaid in Tuachan. When we did leave the appointment and walked to the car there were puddles of water everywhere! It had rained while we where inside. The weather had called for scattered thunderstorms...Oh NO!!! I had my fingers crossed that would be the end of the rain....

Hailey was one happy girl when we arrived at the show. We had excellent seats and right away Hailey started with introductions to all who sat with us. Here is her conversation: 

Hailey: Hi I'm Hailey, This is my mom, mom. Mom, say hi!
Me: Hi! 
Hailey: This is my Josh. Josh is a boy. Josh say hi! 
Josh: Hi! 
She is our social coordinator. I love that she makes friends wherever she goes. You can be 8 months old, 8 years old, or 80 years old. Hailey's going to befriend you.  

The backdrop to the show is AMAZING. You are placed in a mountain. 

Right before the show starts the stage FILLS WITH WATER!! Yes! Fills with water! The music starts and then Ariel pops up. Hailey is frantically waving and is smiling ear to ear! 

Then...we hear Thunder, see lots of lighting, and then it starts POURING rain! On the tickets it says that if the show is cancelled BEFORE the intermission you get your money back. If the show is cancelled after intermission you get a voucher. It is POURING and they just keep on going with the show until intermission and then they cancel it. It felt like an interactive play...
 Due to inclement weather the show was cancelled. I was SO bummed. Hailey just thought the show was over. We were soaked!

One of the people sitting next to us was an instant friend of Hailey's! She is a teacher for special needs children in California and came down with her parents to see the show. It was great meeting her and her family!! 

So we got in the car and drove to the hotel so we could dry off and get to bed. Overall the appointment went great. I'm very glad we finally got Hailey's AFO's correct! I'm bummed about the play and I'm waiting to hear about what our options are going to be. Hopefully we get to see the show in it's entirety but if we don't I know Hailey was content in what she did see. She really loved the music and the characters!

Next time we go we will have to also see Hailey's cardiologist as well as the rehab doctor. The cardiologist ALWAYS makes me so nervous. She is the one person that has not had great news to report back to us. Hailey will need another holter monitor and EKG. She's not going to be a happy camper. 

I better make sure I can get my hands on a few more Fash'em capsules!

Friday, August 1, 2014

Hunter's Hope Family Symposium 2014


This trip was so special to us. I can not wait to tell you about it! Everyone who asks me how our trip was might as well just pull up a chair and get comfy. I think blogging about it would be the best way to really SEE how great it was that we had this opportunity. Let's get started!

When I told Hailey that we were packing our suitcases because we were going to be meeting some new friends she told me that she was going to pack her own suitcase. I got it down for her and let her fill it up. When I looked inside and then looked at her she was very proud of the job she had done.

 I knew that the flight was going to be a long one and that Hailey wasn't going to sleep on the plane so  I had a few surprises up my sleeve. Hailey LOVES blind bags. Any will do, but Josh's mom found Care Bear ones and these were the biggest HIT! Every 1/2 hour Hailey was given a new bag to open. Josh's mom really hit it out of the ballpark with these and they arrived the day we left. Good timing!
 At the airport we checked out bags and for Hailey's medical suitcase they marked it with FRAGILE stickers all over. Hailey got sad she didn't get a sticker so we found one for her:
 The flight wasn't terrible at all. Just long. Plus I was nervous, so that didn't help. We were due to arrive after midnight then we'd get a hotel and be off to the Symposium the next day. I've never been to New York before and I was happy I was getting to do so.
 I would say we woke up bright and early but our body clocks were all messed up. Josh couldn't sleep, he woke up early. I couldn't wake up and probably didn't get out of bed until after 10 (which was really 7 NV time)

At 1:00 our shuttle arrived and Anna from Hunters Hope met us. There were already people on the shuttle and looking back it is so odd to think I didn't talk much on the shuttle because I didn't know anyone, but if I'm ever anywhere with any of those people again I'd be talking non stop. I grew to love so many people so fast on this trip!

 Once we got to the Lodge I finally got to meet Kathleen! She was the one who told me about the symposium and help me get my family there! We checked into our room and got ready for the Welcome Dinner. We all wore our #KellyTough shirts and we were excited to meet all the families. We had some time before the dinner (about 6 hours) so we went to the restaurant and when we asked for a table the hostess asked us if we wanted to go and be seated with the other families. We did want to sit with them so she showed us the way. It didn't take long at all for someone to notice that we were new and introduce themselves and then that got the ball rolling. That and Hailey going up and peaking in every wheelchair or stroller. Right off the bat we met 5 families and I couldn't wait to hear their journey.

I didn't know what to expect. Was I going to be able to meet knew people and make new friends? Was I going to feel included and be accepted? Everyone who knows Hailey knows that she is a social butterfly and she is very big on HUGS! Were people going to be accepting of her and her ambush hugs?

Honestly I don't know why I was so afraid and nervous. I didn't feel any of those things! We sat at our table right next to a family that when I saw them I wanted to say, "I KNOW YOU!!!" I knew them because of Facebook and the page they have for their daughter Anna. I knew most of the people through their pages. It was their first year attending too so I tried to follow their lead.

At the welcome dinner after we ate we went around the room and introduced ourselves. I wanted to be the one to speak to everyone but Josh took the mic and didn't say any of the things that I had been planning on saying for a whole week! I didn't want him to make a bad impression of us!

After the introductions I mingled around and introduced myself to as many people as I could in the short amount of time we had before bed. I was exhausted and I wanted to stay up late but it wasn't going to happen. Traveling, waking up early, staying up all day, then having to wake up early the next day wasn't going to work. I figured I'd get myself rested and then I'll be adjusted to staying up.

Hailey wanted to go mingle as soon as we sat down at the table, but we managed to hold on to her until after the introductions and then she was off! She had NO problems making new friends!

 She wanted to play with all the children and it warmed by heart. Hailey didn't see any children with a disability. She didn't see oxygen tubes and tanks, she didn't see suction machines, and wheelchairs. She just saw kids. Kids she wanted to be friends with. She wasn't afraid to touch, kiss, or hug anyone and I LOVE that about Hailey.
 It surprised me that she did come up to me once and she was talking about a suction machine. She said, "when I was a baby you did that with me." That's true. I did do that. She remembers that?! How? Why? She met children with G-Tubes like hers and made sure she showed everyone which belly pad she was wearing and she wanted to see theirs.

I'm not going to lie and say that Hailey didn't bring up a lot of questions when people saw her. She did, and I knew she would. I was kind of afraid people would look at us and say, "she doesn't look like she has Leukodystrophy." because that's what I get when I am at home and I explain Hailey. I did deal with Hailey when she was in a semi-vegitative state, but only for a short time. Hailey didn't walk, talk, lift her arms, hold her head up, sit up, eat or swallow food, I had to suction her, and I had to rotate her at night so she wouldn't get bed sores, and that lasted for a year. She is still tube fed and she uses diapers as well. I know what it's like to care for that type of a child to a certain extent. I thought people would be mad at me. That's just me being crazy though. I heard people tell me that knowing Hailey's story and seeing her gives them HOPE. They love her ambush hugs and how she holds their children's hands and kisses their foreheads. I'm so glad Hailey brings them comfort. I think the most popular question in regards to Hailey was, "What did you do to get her back?" I hated having to say, "I don't know...." I do all the therapies, PT, OT, SLP. We do Hippo Therapy (horse therapy) I use the DoTerra Essential oils, we see a NUCCA Doctor. I can't pin point what it is about Hailey and the type of leukodystrophy she has that she is the way she is.

So many great people support Hunter's Hope. Hailey went around hugging people and I told Josh, "Hailey's trying to hug someone who's in the middle of a conversation, can you go get her?" Josh says, "that's not just someone. That's Thurman Thomas, Hall of Fame Running Back for the Buffalo Bills!!" He didn't mind at all. He hugged Hailey right back!

Hailey found her way over to Jim Kelly and he got a hug and she hung around him like she was part of his family. He didn't mind at all. He welcomed her over and it was so great. 

 They had a wall of photos of these amazing children and Hailey looked at it over and over. 

Hailey also found Jill Kelly and I felt like I knew her. I read her book and I really wanted to thank her for doing this and being here for our families. 

I NEVER felt uncomfortable around anyone ONCE. The families that have been there before were picking up like there hadn't been a whole year in between the last time they saw each other. Everyone was taking turns holding each others children. I even met parents who's children have passed away. I remember telling someone before I left that the symposium was open to all families who have dealt or are dealing with Leukodystrophy. They had said to me, "why would you want to be reminded of your child when they aren't there?" I know why they go and I'm so glad they do. They are such a comfort. They know what it's like for the families that this is happening to. They are amazing people. I learned you NEVER stop thinking about your child. It's not like you forget and then going to this symposium you suddenly remember again. They have people to talk to that know what they are going through. We are a family in the end.

After dinner we had to go to sleep, I couldn't keep my eyes open and I was afraid I'd stop making sense. Tomorrow was going to be the first day of the conferences and Hailey was going to be able to go to Kids Kamp!

The next morning we woke up and got ready for the day. First was breakfast then I'd take Hailey over to Kids Kamp. I worry when I'm not around Hailey. I have panic attacks when she goes to school everyday and I'm not right there to watch over her to make sure she was safe. I had such a calm feeling when it was time to take her. I just told them Hailey might need a little extra help and they were fine with that. I never felt worry for her. She had so much fun! She'd be upset if we came in to change her diaper as if worried we were going home.

I got the opportunity to speak with 2 doctors. After I told 1 of them how we were told Hailey has an unspecified Leukodystrophy I told him a little more info and right away this is where I am a little shocked....

The doctor mentions that Hailey may have ADEM Leukodystrophy. Um? Sound familiar? Hailey was originally diagnosed with ADEM. I thought those were 2 totally different things? I thought that ADEM mimics Leukodystrophy. I looked it up on the Hunter's Hope Website and there it was, ADEM Leukodystrophy. I told him that whatever information or medical records he needs we are willing to give him. I also heard from the families that were there to look up and go to a Doctor Escolar. Such crazy information! I just hope we get the opportunity to meet with these doctors so that we can know everything we need, to help Hailey.

The conference part was so informative. Did you know that there are only 2 states that test for Krabbe Leukodystrophy during a newborn screening? The newborn screening is that heel prick test that all babies get at birth. They could find out if a child tests positive at that time. Why don't all states test for it? Good question! Hunter's Hope is making it their goal to have every state add these tests to it's newborn screening. If there aren't people who will fight for this to be done it will go un tested. If a newborn tests positive for Krabbe Leukodystrophy or many other Leukodystrophys before they become symptomatic there are treatments that can be done for them. You can read about Newborn screening tests on the Hunter's Hope Website. Please take a moment to read it.
You can even read this article about how this simple newborn screening saved the life of a little girl we got to meet at the symposium.

After the conferences during the day we picked up Hailey from Kids Kamp and took her down to have a Family Photo taken of the children at the Symposium along with Jim, Jill and Erin Kelly. After the photo it was free time to mingle before dinner. Hailey made her rounds.

 Every child was given a Buffalo Bills hat and Hailey wore hers with a big smile on her face. 

Hailey with her friend holding hands and smiling! 

Josh Elliot was on property with NBC Sports doing a segment on the Hunter's Hope Family Symposium which will air during the Half time show of the Hall of Fame Football game. Everyone MUST watch. 
Hailey made sure Josh got a hug as well! 

 Hailey found Jill Kelly again and I love that you can see the love from her embrace. 

Baby Anna! Hailey gravitated towards Anna whenever she was around. Anna always had a very stylish bow in her hair. Hailey could talk to Anna for hours. The moment I held Anna I instantly fell in love with her. I couldn't stop looking at her sweet face. 
 All the first time dads are inducted into the Hunter's Hope family by wearing a very special sweater and passing it along to the next new dad. This was Josh.
 This sweater reminded me of that movie "Sisterhood of the Traveling Pants." This sweater fit every single dad that tried it on perfectly. One thing I wanted Josh to get out of this experience was that I wanted him to create bonds with other men so that if he ever needed to be able to talk to someone he could. I hope he was able to get that. 

The next day was a very emotional day. VERY! After lunch they had separate sessions for the women and the men. We were able to get together speak about what we wanted to speak about with no judgment, just support. 

After the separate sessions we participated in the EveryStep walk. We as families raised money to help support this amazing organization. We walked together. We wore our shirts that support our children and their courage. 
This was my favorite shirt! 

Some people only dream of Angels. 
I have held one in my arms. 


We all participated in the EveryStep Walk and afterwards there was a balloon release for all the children who have passed. It was very emotional, and the balloons looked beautiful in the sky.

Lots of hand holding and hugs.

Another family that we met that I follow on Facebook was Lily. We love Lily's smile!! 

These 2 families made me feel like I belonged immediately. I can't thank you guys enough for the conversations, the laughs, and the hugs! 

Friday was also Josh's birthday and one of the best gifts was getting to see his brother and sister in law, Adam and Megan. Hailey was all smiles when she saw them. She made sure she introduced them to everyone there. 

After the meals there were raffles and when Hailey heard her name called it was as if she won the lottery. She was so happy she won a prize! Then the next day she won again! She won a football signed by Jim Kelly and she thought it was so FUN! 

The next morning we had a free family day and we decided we are SO close to Canada we have to go see the falls! Adam and Megan had rented a car and we were off to see this amazing piece of nature.

 It was a quick trip, we wanted to get back and get ready for dinner. There was a talent show for all the kids and this was everyone's favorite part! 

 After dinner before the show, Hailey made her rounds and made sure to see how everyone was doing. She even stopped by to help with bottle duty. Everyone included Hailey and she was NEVER turned away for bothering them. 

Then it was time for the show. Hailey absolutely AMAZED me! She was so fierce in her performance. I had no idea she had this in her. If you haven't seen the video it is a MUST and it is posted on Hailey's Facebook page. Every time I watch it I still get teary eyed! 

I love this picture of Hailey and Lauren!! My heart swells looking at it!

After dinner we were able to move downstairs and just sit and socialize. I tried to talk to every single person there, but I didn't do a very good job at it and I'm mad at myself for that. It was our last night together and I just wanted to make the most out of it. It was getting late and we hadn't packed and it was time for Hailey's medication. Josh said that he would take care of it and that I could stay. That was very awesome of him. Before Hailey left she wanted to make sure she said goodbye to everyone she met. 
Seeing her love for everyone is so touching to me. 

 Saying good night was very hard, thinking about it being another year until everyone is together again is even harder. 
The next morning Hailey woke up and was very un-steady she couldn't walk without falling and my heart dropped. The combination of everything we had done and not getting enough sleep could have led to this but we have been through this before. There was a doctor there but we wouldn't have time to see him before we had to leave to catch the plane home. We kept Hailey in her stroller and things ended up not being her usual ataxic episode. Today she is able to walk but her gait is wider then usual. We are just going with the flow. It's hard to hear that everyone has a neurologist that they can call up and make an appointment with. That cares about their child and their case and we don't. I keep wondering if we belong here in Las Vegas? 

This picture is of some of the amazing people who work for Hunter's Hope. Thank you guys for all your hard work and putting this amazing event together! My one suggestion to you is that you stand at the front of the door when you meet families and say, "Welcome to Hunter's Hope, Here's your complimentary box of tissues." 

Just an FYI. I was given this card from the TSA agent who told me that the next time we fly we can call to set up a passenger support specialist to help with getting through security. He said every airport has one. This is great information and I had no idea this was available. Well now I know and I want to share this with you! 

I can't believe we were given this opportunity. So happy I could meet these families, and doctors and especially the children. I'm so happy I can keep in touch with everyone on Facebook. It will make the next year a little easier to wait for.

If you get a chance please go to the Hunter's Hope website and look through it. It has great information for anyone who has questions about Krabbe or other Leukodystrophies.
Like and Share the pages of the kids that have Facebook pages. Everyone would love the support.

Thank you Hunters Hope for inviting our family to attend the symposium this year. I will never forget the wonderful experience we had together as a family!


***Update taken from the Hunter's Hope Facebook Page:
This Sunday, August 3rd, will be an exciting day... First, the Kellys share their story on ESPN's Outside the Lines at 9am EST. THEN, during half-time of the Bills vs. Giants Hall of Fame Game another story featuring the Kellys and some of our‪#‎Leukodystrophy‬ families will air! The game starts at 8PM EST on NBC. Please tune in and help spread the word!! ‪#‎NBCSports‬ ‪#‎ESPN‬ ‪#‎BuffaloBills‬