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 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 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! 

She right away called over to me, "MOM!! Look! Frozen shoes!!!"

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! Love that smile! 

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 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! 

CUPCAKES!!! These were the cutest cupcakes ever!!! 

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 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! 

 Hailey being silly with her dad waiting for the show to start. 
 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!

 We got an autograph from every single pilot! Hailey was smiling the whole time! 
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!