Friday, January 16, 2015

Hailey's upcoming surgery is approaching

Once we got back from our Christmas vacation we thought we'd have some time to get back to normal and back on a schedule. Hailey missed school and her friends. She was having a great time in Washington but Josh and I both noticed that something kind of seemed off with Hailey. She just seemed to get tired throughout the day which is very unlike her. Once we got home and she returned to school her fatigue continued and she started getting headaches. 

I received a call from Hailey's cardiologist and she said that she got together with Hailey's team and they felt that with the ways Hailey's holter monitor is reading that we really need to move forward on placing her pacemaker. I had told her that we knew it would probably be with in the next few months. She was silent then said, no no no, we need her here next week! 
I wasn't fully prepared for that. I knew that the surgery would take place this year. I didn't know it would take place within a week.

I think I was prepared to be un-prepared though. While talking to Hailey's team she also suggested a new MRI to be done. Her last one was 2 years ago and it's a lot easier to do an MRI prior to placing a pacemaker. All the doctors are very nonchalant when they talk to you about procedures for your kid. Maybe to make you feel more at ease or comfortable. It's a procedure that I know we have to do, but I don't want to do. Last time Hailey was under anesthesia she completely regressed and was vegetative for a YEAR! Now she'd supposed to be sedated 2 days in a row!? 

I've taken the advice of other parents who's children have also been diagnosed with Leukodystrophy and I have started to speak with the assistant to Doctor Escolar in Pittsburg Pennsylvania. She suggests that Hailey get a current MRI also.

There is SO much to do and so much unknown, and if one more person tells me that their grandfather also has a pacemaker I'll explode! It makes sense that an older person gets a pacemaker, but this is my 6 year old. It's different! **Side note there have been COUNTLESS people who have told me about their grandfather I'm not talking about anyone in particular...Don't take this personally if you were one of them and think I'm talking about you!! LOL! Just for laughs lets not mention this and see how many people comment on Facebook about their grandpas :0) **

I don't know how long we will be in the hospital, I don't know where we are staying (I've called the Ronald McDonald House and I'm working on getting a room there, but it is NOT easy. There are lots of families that need a room and it's first come first serve), I don't know how Hailey will come out of this, I don't know if I bring Hailey's tubes & formula or if they have it. I don't know how much pain Hailey will be in. I don't know if I'm making the right decision and pretty much forcing my child to do this procedure whether she likes it or not, whether she is scared or not. I'm scared and no one says to me that I can back out and not have to make these decisions. These are just the things that are going through my head among other things. My brain has been going non-stop. I feel so overwhelmed that the other night after therapy we get into the car to drive home and I could not remember how to turn the headlights on. I thought I was finally going crazy. It took me taking a moment and some deep breathes and I remembered. It was something that has never happened to me before. I was almost afraid to tell anyone, I didn't want the anxiety of wondering what they were really thinking of me once I told them what had happened. I know I was just super stressed and really needed a moment to focus. I decided to share because these emotions that I'm going through are real. I shouldn't hide them and put on this brave face just for show.

So we will be once again packing up and heading out with no return date given. My mom and sister will help out back at the house with the dogs and Josh's mom will meet us up in Utah, so that we have family and support near by. Hailey will be out of school and therapy for the next few months and I am working on getting a teacher to come to the house for when she is ready. I honestly don't have time to dwell or overthink things. I have to focus. Focus on Hailey and how the cardiologist said this will give Hailey a better quality of life....if she doesn't have any complications with anesthesia...I think Josh and I are both worried about the Hailey that we will get when she wakes up. I remember the last time she was going to be sedated and I just had a feeling that I needed her to tell me that she loved me and I recorded it (I've shared that story before) I kinda want to just take endless videos of her just in case. That isn't me being negative, it's me wanted to be prepared. Expect the worst but hope for the best. I would hate for her to be upset because she was having trouble doing things she could once do. I don't want her to feel as if we took away her abilities. 

I'll have to close up the Etsy shop for who knows how long, but I'll get all the orders out before I do. I'll keep new information up on the Facebook page and the rally page for those who want to follow along. Thank you for following along and your well wishes. We will be seeing you soon! 

Wednesday, January 14, 2015

Christmas 2014

We all had such a great Christmas and New Years! We packed up the car, loaded up Hailey's supplies, grabbed her dogs and headed out on a 20 hour voyage to spend the holiday in Washington (State) Once we arrived it was NON stop and time flew right by!

Hailey made sure that we wrote yet another letter for Santa because we were now at Grandma and Grandpa's house and he might not have known that ;0)

LOTS of baking! Everything was SO yummy! 

Josh took us down to Portland and we saw tons of things I haven't seen before in all the times we've been there. Hailey LOVED this HUGE Christmas tree. 

We stopped at the mall and this was the 1st time that Hailey wanted to see Santa. So we grabbed a quick photo before she changed her mind! 

More baking with grandma!

On Christmas Eve we took Hailey to church and she was able to sit with the other Children on the stage. 

 She loved singing the songs and the candlelight. Hailey didn't know any of the words but you would have never known it. She sang out loud and we all loved it. 

After Church we went to Granny's house for pictures, gifts, and treats! Everyone takes turns and gets a family photo. Hailey is getting so tall!

The next day was Christmas morning and Hailey was up BRIGHT and early! 

She received wonderful gifts from Santa, friends, family, and our readers! Thank you everyone!

Just in case you were curious...thanks to Santa and a few Hugs for Hailey supporters there were MANY Shopkins under the tree with Hailey's name on them!!! Even a few Season 2 which we still can not find in Las Vegas! These new friends kept Hailey busy for HOURS! She LOVES Shopkins! 

We took a night off and piled up in the car to see some of the most decorated houses in Vancouver. Every house we stopped at had just a TON of lights and music! Hailey loved it. There was even a house that accepted donations for Make a Wish of Oregon. They raised enough money to fully grant a wish for a child! Amazing!

One of Hailey's Christmas gifts from Granny was a trip to Build a Bear, where Hailey built a Pony of course! Hailey showed Granny how it was done and was one very happy little girl! 
 Granny sure does know the way to Hailey's heart! 

After the New Year it was time to pack on up and head on back. Another 20 hours in the car. We did split it up and we took plenty of breaks. I imagine it really did take even longer then 20 hours!

Thank you to everyone who sent Hailey a card or a gift. We really appreciate everyone who reads our posts! 2014 for Hailey was a great year. We had a few bumps in the road but overall it was great. So far 2015 is getting off to a bit of a rough start. More on that is coming soon!

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 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!