It's a new year for Hugs for Hailey

Happy New Year! I know it's March and this post is a little late but as I'm trying to update the blog I decided it'd be easier for me to update monthly instead of a post for every single event. Let's see how this works...

Hailey's feet often ache from having to wear AFO's all day long in order to be able to walk. We decided to pamper her by getting a fun foot bath filled with Orbeez gel beads. I also scented the water with some of my Doterra Oils! 

 January 2017 marks Hailey's 2 year pacemaker anniversary! Can you believe it's been 2 years? If you haven't read about Hailey's pacemaker you can do that in some of my previous blog posts. This year at her new cardiologist they celebrate by letting patience pick a present for their Pacemaker's Birthday. Hailey picked this Doc McStuffins play set and loves it! 

An awesome Make a Wish event we went to was for a Medical Transportation company that has partnered with Make A Wish Southern Nevada. We attended the grand opening and it was so fancy! They had a medical plane on display and Hailey wanted me to go inside with her. Does anyone remember my blog post about Hailey's flight for life? If you do you will know what my answer to that question was...

Being a Wish Kid Ambassador is a tough job! Hailey enjoyed her first massage at the event! 

January also consisted of a trip to Utah....surprise surprise...

While there we had a physical therapy appointment and I've said it before. Our local PT is NOTHING in comparison to the Utah therapy. I mean you won us over with the ball pit but then we saw...

 A rock wall!? How amazing! 

We also loaded up our ETSY shop with LOTS of new items. With Hailey's love for Disneyland these new items were an easy choice. Have you checked out our new stock? You can do so HERE. 

We even discovered some new fun things to do with Hailey's hair. This was a pull through braid I learned from YouTube!

Last year Hooters Partnered with Make a Wish to donate a very large amount of money. Hailey went to Hooters to accept the check on behalf of Make a Wish Southern Nevada. It was a very fun night and they gave us these cool glasses! 

Thanks Hooters!

January we also celebrated our dogs 10th birthday by getting her a donut from a local dog bakery. The bakery smelled so delicious when we walked in. Everything was human consumable but with out sugar they looked better then they tasted! 

We are looking forward to February! Join us in following along!

Dusting off the blog...The last months of 2016

So much is happening in the Hugs for Hailey household that this blog had been put on hold. It's just so much easier to post on Facebook a quick little post and move on. The blog is much more work and very time consuming and time isn't always availble. Time is a luxury we don't seem to have enough of. My last post was August of 2016 and so that I don't flood the internet with posts from Sept - Dec I will try and make a few bulk posts starting with this one. Here we go! 

The Hugs for Hailey Etsy store kinda took a turn as we tried to revamp the items we sold in it. With Hailey being such a Disney fan we decided that we would add Disney inspired items at a great price! Check out some items listed in the shop below: 

We have necklaces, keychains, and earrings!!!

Hailey started 3rd grade at a new school, with a new aide, new teachers, and new nurse. There were a couple wrinkles we had to iron out but things have been great! Hailey came home with a spelling test that she got 100% on and that is AMAZING!!!

We've continued with horse therapy and Hailey still loves it as much as ever!

We had spent a lot of last year helping out with my dad after he caught pneumonia and had to be in a rehab hospital for many months after his hospital stay. We took Hailey to visit him since she is so good about caring for someone who has medical issues. He had a tracheotomy done and also had a g-tube placed and Hailey would take him for walks in his wheelchair when we visited. Fast forward to now and he is doing great! 

We have been very involved in Make a Wish and try to take Hailey to every event we can. Last year Make a Wish Southern Nevada had an event where they collected airline miles. They had local companies donate and interact with the wish kids. The Hooters Company donated money and Hailey was their wish kid. It was a ton of fun going to Dave and Busters and playing games. 

We still take Hailey to Disneyland as part of our therapy and we love going there so much. Hailey is so happy there and we love seeing how happy she is there. 

Another Make a Wish event we attended was another type of NHRA race but for stock cars. Hailey was invited to go to the meet and great and it was a lot of fun! 

We still have to go to Utah for Hailey's cardiologist appointments. We are usually there every 3 months and with the cost of time off from work, hotel, gas and food, we are slowly going into debt having to do so. Yes we have cardiologist in Nevada but NONE that know of or work with children diagnosed with Leukodystrophy. The team of doctors that know Hailey and know leukodystrophy are in Utah so that's where we go. We have had some awesome supporters go on Hailey's Amazon wish list and donate gift cards for our meals and that helps so much and we appreciate it! 

We try not to bombard Hailey with JUST doctors appointments in Utah. I don't want her to create an aversion to traveling to Utah. Where there is a chance to take Hailey to a musical at Tuachan and we had seen Peter Pan the last time we went and it was great!! 

We even had a meet and great with the characters after! 

Another Make a Wish event was taking Hailey to her first NHL Hockey Game! It was so great of the LA Kings to invite some of the local wish kids to the sold out game!

Hailey had SO much fun cheering in the stands and it was great to see her have such a great time!

Hailey continues to try and share her experience as a child with a disability living in Nevada. Her photo was featured in an article that talked about the benefits of horse therapy. 

Before we knew it it was October and Halloween was all the sudden here. Hailey was a Shopkins Character and we attended the Ethel M Boo Bash again this year! Such a fun event. It has changed over the years and isn't as extravagant as it has been in the past, but still a lot of fun! 

Our local Make a Wish office has also had some big changes happen for them too. They ended up moving offices and we had a chance to go and see the old office one last time before they moved. While there Hailey took some selfies with the CEO of Make a Wish and also our local radio celebrity Mercedes. 

Hailey has grown up so much and it seems like it happened overnight. Yes Hailey is 8 years old but we have been told that mentally she is in the 4 year old age range. She has just now started to LOVE dolls! I love seeing her imagination work when she interacts with them. It is really adorable!

Her love for Build a Bear hasn't let up. Every chance she gets she wants to go. If you ever wonder what gift to give Hailey Build a Bear is a good choice. She was given a gift card for Christmas and had to spend it right away!

Christmas is always a magical time and we always have so much to do that December seems to just fly by. We attended a tree lighting ceremony with Make a Wish and they also had ice skaters. Hailey was in the front row and amazed at the sight!

We took our annual Disneyland Christmas vacation and Hailey got to experience a character breakfast at the Grand California Hotel and it was So much fun! 

We met a lot of new characters our last trip and it was so fun to experience this with Hailey. 

The highlight of the trip was getting to meet Princess Elena of Avalor! She took such great care of Hailey!

 Hailey was given this game called Pie Face for Christmas and we had many fun Pie Face filled nights with it! 

We also had a new friend join us this year for the month of December. Hailey received an Elf on the Shelf from her aunt and Hailey named him Fred. We had so much fun finding Fred every morning and seeing what trouble he got into. He was a bit of a trouble maker but Hailey loved him so much. she was even very sad when he ad to go back to the North Pole. We loved having a little bit of magic every single day!

Our annual Gingerbread house was one of our bests yet!

Our family spent Christmas in Oregon and we had the opportunity to visit the Tillimook Cheese factory and couldn't leave without getting an ice cream, even if it was bitter cold out!  

I want to say 2016 was a wonderful year but it ended on a very sad note. Our beloved puppy Daisy who had been by Hailey's side since she was in my belly had passed away. We did not know she had a tumor the size of her liver. It had ruptured and she passed away. Daisy always took care of Hailey. She just knew when Hailey was sick and did everything she could to love on her. Daisy was MY first baby and we have all taken this lost very hard. The house is so much quieter and it will never be the same. Hailey really didn't comprehend what was happening. We told her Daisy was sick and went to heaven and Hailey would ask us that when Daisy feels better could she come back from heaven and it was so hard to tell her that she couldn't come back. 

Goodbye my sweet puppy...

So as 2016 came to a close we look forward to finding out what will happen for the Hugs for Hailey family in 2017. I will try better to keep this up to date but that doesn't mean I won't slack from time to time...

Leukodystrophy Awareness

September is Leukodystrophy awareness month! We have decided to open our booster back up for anyone who would like to purchase a Hugs for Hailey t-shirt! These are the American Apparel super soft shirts! We also have NEW fun colors! You'll even get your shirt in time to wear it for the month of September!

Check them out HERE!!

July 17th was Diagnosis Day.

Four years ago on this day we were in Salt Lake City at the Western Leukodystrophy Clinic. We had an appointment with a neurologist who had more knowledge of Leukodystrophy then the Neurologists in Las Vegas.

I have wrote about this before so I won't repeat myself, but this was the day we were told that Hailey had Leukodystrophy. He couldn't tell us which specific type Hailey had, but from reading all of the past years MRIs he was certain this was what Hailey had.

Fast forward 4 years later to today and we are only a tiny bit closer, we may even have a specified type of leukodystrophy now.

We wanted to verify with a neurologist if Hailey did in fact have ADEM Leukodystrophy. This type of leuko checks a lot of boxes for Hailey, but not every single box. We have yet to speak to or find a neurologist that specializes in Leukodystrophy look at Hailey and review her blood tests and MRIs. We have had 3 out of 9 "guess" that if Hailey had a Leukodystrophy it'd be ADEM which is: Acute Disseminated Encephalomyelitis. 

We have also done many genetic tests and have only come upon mutated genes for Hailey. There were a total of 4 that we were told about. One that is VERY similar to leukodystrophy but we have not been told if definitively. It's confusing because when the neurologist look at Hailey's MRIs they know she does have leukodystrophy, but since there are SO many different types and so many new and undiscovered leukodystrophies we are left in the dark.

In the end I guess it isn't SO important that we know, but I would like to know what else to expect. When Hailey needed a pacemaker was it because of the leukodystrophy? I don't know of any other Leuko children that have a pacemaker, but we do know that children with leukodystrophy do have issues with their organs since the brain controls everything. Hailey's cardiologist would love to know more about what had caused Hailey to need a pacemaker and she asks us overtime we see her if we have any new information.

So can I or should I go with ADEM Leukodystrophy as a diagnosis? Is there a test that can be done to tell us if that is the type she has? Is there a neurologist that will help us? We don't know. We still don't have answers, but every July 17th these questions really stand out to me and I wish I had answers.

2016 Hunter's Hope Family Symposium

The 2016 Hunter's Hope Family Symposium is right around the corner! At the end of July we will take Hailey to Buffalo so that we can spend time with other families who have been affected with Leukodystrophy. 

The time that we spend at the symposium is so incredibly precious to us. The very first time we attended I came back so refreshed and re-energied. I wrote about my experience HERE and I urge you to read through it. It's really the only way I can express how much we loved being a part of this extended family we have found. 

It's difficult to explain the feeling of inclusion, a place where there is no judgment when you have questions that you are afraid to ask, or feelings you aren't comfortable sharing with friends and immediate family. At the symposium these families KNOW what everyone is going through, what you have been through, and what you will go through. 

Last year I was in a panic because I was on a plane with my family and I noticed that I forgot Hailey's adapter for her g-tube, a necessary part of how we give her food and medication. I was going to be 4,000 miles away from a very important piece of medical equipment. I didn't want to post on my personal Facebook page because I worried about people thinking, "wow, she's a terrible mom forgetting something so important that her child needs!" So I asked my Leukodystrophy family if anyone had an extra adapter I could have and I got TONS of replies telling me they could help, and to not feel bad. If I was going anywhere else I'd be in big trouble, but going to the symposium I was covered and not judged. I was still embarrassed, but I was so happy it all worked out. 

Going to they symposium is something I feel we need to do. We need to be there, but it is so incredible expensive. The average cost for a family of 4 is $5,000. 

For families in attendance, meals and accommodations are paid for by Hunter's Hope. Travel arrangements to and from the event are the responsibility of the family but travel assistance is available for qualified families unable to cover these expenses. Donations made to Hunter's Hope help with these costs along with people who are willing to sponsor families. Any amount is welcome and appreciated.

I wanted to post a few photos from past symposiums that we have attended. These families and these children are so loved. Some children that were there the year before aren't there the next. Leukodystrophy takes the lives of these children, but we remember the times we held them, and kissed on them, and loved on them. 

I had said before that Hailey does not see disease or disability in any of these children. She goes up and talks to them, hugs on them, holds their hand, rubs their cheeks, she LOVES all these amazing children and their families. One thing I did notice is that Hailey also changes her voice to be softer and more gentle when she speaks to them. It's adorable! 

Hailey loves to mingle and she is such a social butterfly. She introduces herself to every single person and sometimes even joins them for meals instead of sitting with mom and dad. She has always been welcomed and I have never felt as if she was in the way. She gets to attend Kids Camp while mom and dad are at the symposium part and she LOVES it. They have activities planned for all the kids and if she needs help there is always someone by her side.

There are many ways you can help us attend the 2016 family symposium. We have set up a Team Hugs for Hailey page for the Every Step walk we will participate in while at the symposium. You can click this LINK to be taken to our page! ANY amount is appreciated, and you will know and see what your donation did for us. Our goal is at least $2,000 and I HOPE we can meet that goal.

We are counting down the days until we see our Leukodystrophy family again and Hailey is ready to give out some hugs!