Wednesday, March 22, 2017

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...