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!! 

THANKS FOR READING!!!