April Happenings. Oh my! What a month!!

 Time to talk about April even though I know we are in June. Read on and you will cut me some slack. It's been Crazy!!

The month of April didn't start off too bad. Hailey went to horse therapy and had been doing great! 

We were able to celebrate Easter and Hailey's Aunt got her this cool Easter shadow egg. Hailey would look inside every time she passed by the egg. It was so neat! 

 We did go to a few Easter Egg hunts but Hailey started to not feel to well. It was spring break and she just seemed like she wasn't feeling to well. No fever, but she just got worse and worse. 

She did start throwing up and not holding anything down so we ended up in the emergency room! She was ataxic and due to disease progression she was becoming lethargic and dehydrated. 

We discovered she also had strep throat and a bladder infection. She was given antibiotics and was doing fine until...

We discovered that she was allergic to her anti biotic! We did go to her pediatrician and we now have to add allergic to amoxicillin to her charts...

Everything cleared up pretty quick and Hailey was back to normal. Which was great because we always have fun things planned for her! 

She attended a dinner for the Make a Wish volunteers and she had a ton of fun. 

We were also invited to Bonnie Springs where they were raising money to be donated to Make a Wish. It was put together by another wish kid that is someone very close to Hailey. We had so much fun! 

There was so much to see! We loved the animals and the train rides! 

Then this happened....

Hailey's mom was diagnosed with Graves Disease or a Hyper Thyroid and needed to undergo radiation therapy. She was also going to be in restricted isolation for 3 days and then modified isolation for 2 days after that. Hailey's grandparents flew down and Hailey was able to face time with mom. It was pretty odd not being able to be with Hailey when that's all Hailey's mom did. She took care of Hailey 24/7. Being in isolation meant NO contact, No sharing bathrooms, beds, towels, linens. No touching food or plates or utensils. Throwing everything touched into a garbage bag and holding the garbage for 6 weeks. 

After isolation was over Hailey's mom developed thyroiditis and needed to be put on steroids. Then now that we are 7 weeks after radiation we receive our bill which is HUNDREDS and HUNDREDS of dollars. Hailey's mom set up a booster to try and help raise money to pay that bill. You can see the booster HERE if you are interested in helping. 

That was April. Now on to May...

March Happenings

Wow! So I'm just now posting about March when April is almost over...LOL! Things have been crazy over hear as per usual so lets get this update started.

 March was the annual Walk for Wishes event. In the past you saw Hailey in all the promotional videos prior to the race. Sadly not this year. It's others turn. Our teams were huge back then! Our team was about half the size of last years, but we still walked and raised money for wish kids like Hailey! 

Every year Hailey and her cousin cross the finish line together holding hands. This year was no different! 

We did catch our friend Captain Jack walking and join him and his crew for a bit. 

You can't have leprechauns not be mischievous on St. Patrick's Day! This is always so funny to Hailey. 

There were so many nice days weather wise at the barn where Hailey does Horse Therapy. When the chickens lay eggs Hailey wears the egg apron and goes collecting. She LOVES it! 

The way this chicken looks at us cracks me up! HA! HA! 

Hailey's Horse Lena is the second horse we've done therapy with. When Hailey started we worked with another horse. Does anyone remember his name? 

When Hailey first started lessons she worked with Pablo. 

 He did a great job with Hailey. It's a scary thing to ride a horse when you've never done it before, especially as a mom letting your child ride a horse when they never have before. 

Sadly Pablo did pass away unexpectedly and our hearts were broken. When we told Hailey she asked if Pablo was with our Daisy, who passed away last year, in heaven? She's understanding more and more and it's very sad how much death we experience. She loses a lot of friends. 

 But we keep the memories. Goodbye sweet horse. We will miss seeing you Pablo! 

The month of April is on it's way our and May is around the corner. You all know what happens in May right?!?!?!?

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...