Wednesday, September 30, 2015

Time to dust off the blog! Summer Recap

WOW!! It's been a minute since I've blogged! Life is just always SO busy and the easiest things to forget get forgotten. I really didn't even blog about our summer so here is a quick recap. If you follow Hailey on Facebook then this won't be new news.


In June we tried to take Hailey to as many local baseball games as we could. We don't have a professional MLB team but we as a family love baseball either way. We are never able to stay for very long. Hailey's bed time is 7pm and she kinda gets ataxic if she doesn't get 11 hours of sleep. Our friends always make sure that whenever we want to go to a game we have tickets waiting for us. We're very thankful for that! We are always happy to meet new friends and we did that this year! We love that people love Hailey! She makes friends every where she goes!

We also had a special visit from Hailey GREAT grandma who visited from Peru! We were able to play and even go to a restaurant. Spending as much time as we can while she's here! My Aunt who lives in California who is my mom's sister drove down with my grandma and we really appreciate that! Hailey thinks that my mom and aunt look alike and often call my aunt "the other grandma" which I think is super cute!

Hailey is growing and growing and has passed being 4ft tall now! Which means that she needed new AFOs to help those legs of hers! We had to go to Utah too many times to count! I loved how her old AFOs used to fit into her purple converse shoes, but now I'm sad they no longer fit...
 When Hailey got her new AFOs she got some new kicks to go along with them. Without AFOs Hailey wears a 13 1/2 with AFOs she wears a 4 1/2 ! New Balance shoes come in wide widths so we had to go with long as they have some pink we're good.

The movie Inside Out was the GO SEE summer movie for us. Hailey LOVED it. I think it really helped her to understand feelings. We can't wait for the movie to come out. We put it on her Amazon wish list!

We did as much swimming as we could this summer. Every time we had to go to Utah and stay in a hotel we made sure it had a pool!  We were able to find some reusable big kid swim diapers online and they worked great!

This little fish loves the water and even wanted to learn to go under the water since all the other kids were doing it.


I LOVE JULY!!! July is when we get to go to Buffalo and spend a few days with our Leukodystrophy family. I hate that all of the children have to have this wretched disease but I'm so thankful to the Kelly Family for getting us all together.  No regular friend or family member can really know what you go through, but my Leuko family does.

One thing that happened that I really didn't want to talk about was that I had forgotten Hailey's adapter for her g-tube. I had everything else. I had the formula, the machine but the one part that puts it all to use is the adapter tubing. I had forgotten it in the car and we were about to board a plane and I felt sick. How could I forget the one thing that actually puts the food in her stomach and helps give medications?!?

As I panicked I went on Facebook to ask anyone arriving that day if they had a spare I could have and I would send them a new one when we got back. Within seconds I had at least 14 people say they had an extra they would bring for me and then they all told me not to feel bad for forgetting. I was going to the most perfect place where if I was going to forget a piece of medical equipment I wouldn't be stranded and have to scramble to find this item. Such a relief!

Hailey loves being in Buffalo and seeing all her friends, but this year we were going to be missing a lot of them too. So many babies and children had passed in that short year.  I didn't know how to explain it to Hailey.

I love to see her light up and play and hug and mingle with all the children. The ones affected by the disease and the ones that are not. Hailey loves everyone! She doesn't care if you can't talk or hug her back, or if you need suctioning or oxygen. She sees beyond that. She has a pure heart.

 I like this picture because Hailey always wants to help. She helped everyone that arrived register for the symposium!

We love the Kelly Family!! 
So many old and new friends! I can't imagine not going to the symposium now that we've been. Hailey sang again at the talent show and it was great. (Video is on her youtube channel) Our time at the symposium always flies by. Speaking of flying, on the way home Hailey asked the flight attendant if she could help him and he let her! How amazing right?!  She really loved it.
 They even made her a pretzel crown to thank her for offering to help and doing such a great job!

We are already counting down the days until next July!! 10 months to go!!! We really can't thank everyone who helped with travel expenses by purchasing a Hugs for Hailey shirt! There are many expenses that go with traveling. We have to pay for parking at the airport, for putting the dogs in a "hotel" or for picking up snacks or even eating out. We also want to thank the Hunter's Hope Helping Hand Grant Travel Assistance’ program for helping us get to the symposium this year as well! If you are looking to donate check them out at 


In August we were able to travel to Washington to celebrate Hailey's dad's 40th birthday and Granny's 81st birthday. The weather was great and all of Josh's family was together. 
 Hailey helped her dad to blow out all those candles. It was really a two person job! 
 We did our first pacemaker phone transmission while in Washington and even though Hailey looked terrified it didn't hurt and it was easy! 
 Everyone was showing off their Hugs for Hailey shirts! 
 Hailey took advantage of having Grandpa around and loved being read to while snuggling on the sofa! 
 School was coming up and this gift off of Hailey's Amazon wish list made this girl's day so much brighter!! 
 We even had Hailey's great uncle and his wife visit from Brazil!! This was the first time they met Hailey. 
 Our big summer surprise was being invited to the Hello Kitty Friendship Festival where Hailey got to meet Hello Kitty and friends!! 

And to close up our summer we took Hailey back to Utah and we saw the musical Beauty and the Beast! After the show Hailey got to meet the cast and get autographs!

Then it was time for summer to end and for school to start! Hailey is in 2nd grade and still loves to take the bus to school.

See! I told you we've been busy! That was 3 months worth of blogging all crammed in to one post. I know each month deserved it's own but I just never had the time. Now I can't believe it's already October tomorrow!!!

October should be pretty fun! We have a big surprise in store for Hailey and I might actually be more excited then her! We have appointments all over the place. We have to get a new g-tube put in, we are going to visit with a new local neurologist, I'm going to find as many trunk or treat spots as possible, and we go back to Utah maybe twice...

Stay tuned!!

Wednesday, September 2, 2015

New Necklaces in our Etsy Shop!

 We have added a WHOLE bunch of necklaces to our shop!! We will be using the money raised to enroll Hailey into HippoTherapy. Hippo Therapy is therapy on horseback. We've been off for a very long time while Hailey recovered from her pacemaker surgery. 

We got the go ahead and we are crossing our fingers we can attend this session that starts this month! 

Thursday, August 6, 2015

Thank you to the Little Miss Hannah Foundation

Earlier this year while we attending the Walk for Wishes event I walked around the booths that were there. One booth I came across was for the Little Miss Hannah Foundation. LMHF is a Las Vegas based, Family run non-profit organization that Hannah's Parents started in her memory. I spoke with Carrie, who is Hannah's mom and while discussing rare diseases Hailey's name came up. As you all know Hailey too, has a rare disease. Leukodystrophy is a rare disease since it only affects a small percent of the population. Carrie told me about her daughter and the foundation they started because of her.

The Little Miss Hannah Foundation provides grants and other financial support to offset costs of equipment and related costs to enhance the quality of life of medically fragile and special-needs children and their families throughout Southern Nevada. This was amazing news! I am so glad that there are programs, and grants that help families like ours when it is very hard and overwhelming to have to do this on your own, with no one to point you in the direction that you need. We were needing to get Hailey a new push chair/portable wheelchair and our insurance was not going to approve it since we have a wheelchair that Hailey uses to be transported to and from school and when she is ataxic. I had no idea how we were going to come up with over $1600 for the chair Hailey needed.

Shopping around on eBay we found the chair we would want to purchase for Hailey at a 1/4 of the price and we wanted to get it. We also had to purchase a headrest separately as well. I had filled out a grant application from Little Miss Hannah Foundation and we were thrilled to hear that we were approved for our grant and Hailey would get her chair she needed.

Hailey's dad assembling the new chair! 

 This chair is different from her regular wheelchair in SO many ways! First, it's NOT 70 pounds, it can fold up, and I can lift it in and out of the van without hurting myself. We would be able to take this chair with us during our trips to Disneyland where we could use it with ease! We use this chair all the time! Quick trips to the supermarket, going to the mall, running errands when Hailey needs to sit and rest or when she isn't feeling well, are all things we can do with this new chair thanks to Little Miss Hannah Foundation. Being able to have Hailey enjoy a better quality of life is our top priority.

Hailey's Trip to Disneyland this year! 

A trip to the mall and then to the movies to see Inside Out! 

 LMHF does more then just medical and therapy equipment grants, they also assemble care packages for parents in the PICU, they are advocates for rare diseases, and they provide family support. Last month on July 25th, which is Hannah's Birthday, there is a celebration that allows children, with rare diseases, along with their families to attend a festival. Hailey was invited to be able to participate in all the actives free of charge for being a part of the Little Miss Hannah Family. Hailey had such a great time and I loved seeing her have SO much fun.

Del Sol Cheerleaders being so sweet with Hailey!

Party Ever After Las Vegas was also there and they brought all the Princesses! 

Fun in the photo booth with Hailey and her cousins from Arizona. 

 We'd like to thank Carrie and the Little Miss Hannah Foundation for doing something so great for other families that are dealing with what they have experienced. I invite you to take a look at the Little Miss Hannah Foundation website and familiarize yourself with their services so that if you or someone you know ever needs assistance in Southern Nevada they will have somewhere to be able to go.

Thank you Little Miss Hannah!!