Wednesday, July 16, 2014

An unexpected trip to the Mall

Yesterday was very eventful! Normal day as Hugs for Hailey went to school and we had a Dr. Appointment after. Josh was home from work and had a golf club that needed to be re-gripped. He was going to head down to LV Golf and Tennis,  the Fashion Show mall where my little sister works was near by. I needed to do an exchange at the Disney Store and Hailey wanted to see her aunt. So we all decided to go together. 

While at Las Vegas Golf and Tennis we were able to offer a man, named Chris a ride to his Hotel so he wouldn't have to wait for a cab. It was hot and humid out and both Josh and I do not like cab drivers. This was an act of kindness we were happy to do! 

(Nice to meet you Chris!) 

After that we headed over to the Fashion Show Mall and I did my exchange and I was going to take Hailey to go see my sister. I received a text from her right before we headed over saying she went home early because her ear was bothering her so we decided that we should grab a bite to eat at the food court. I wasn't TOO hungry but I did feel like getting something sweet and did you know that Nordstroms has a cafe? They also have desserts in that cafe so we decided to go there. The cafe was on the complete opposite side of the food court. 

As we were walking towards Nordstroms Hailey spotted the brand new LEGO store that just opened. She didn't even ask if we could go inside she just headed in that direction. We spent some time there and let her play with the LEGOs they leave out. It's a great idea to have those out and Hailey had lots of fun. 

I know the small LEGOs might be more difficult for her to play with but I think her at least trying would work on her gross and motor skills so we decided to get a few for her. Even Josh had fun at the LEGO store. He said when he was a kid he had a suitcase FULL of LEGOs he used to play with. 

It was getting closer to 6 and we headed to the Cafe. We ordered our food and sat down. All the sudden this voice comes on the intercom saying that Nordstroms has been put on a lockdown and to remain where we are until further notice. It didn't seem like this was bothering anyone but I kind of got worried. Was it a lost child maybe? Did someone get hurt on the escalator, was there a thief they were trying to catch? The manager came over and explained there had been a shooting in the mall and no one is allowed in or out until the police release the okay to do so. A shooting was the furthest thought from my mind!  

So now I began to worry more. Hailey will need a diaper change soon and then she'll need medication and if we are stuck in here how do I get her what she needs? While I'm panicking, our dessert arrives and I could barely even enjoy it. I texted my sister to see if she knew what had happened or if she had talked to her shop. The shooting happened directly above her store. If she had been at work we would have been visiting her at the exact time and very near where the shooting was. 

Luckily everyone in the cafe was very calm and Hailey was fine and we were all safe. Josh looked on his phone for more info and about an hour later we were all finally able to go home. It was crazy and scary. 
(Yummy Dessert)   
When I arrived home, I hated having to think about what may have happened if things played out differently. After I put Hailey to bed it was hard getting to sleep. I'm glad Hailey never knew anything was wrong and I'm glad that when I freak out Josh can stay calm. I'm glad we all got home safe.

Thursday, July 10, 2014

What is Leukodystrophy?

I took this definition of what Leukodystrophy is from Wikipedia:


From Wikipedia, the free encyclopedia
Classification and external resources
T2 weighted axial scan at the level of thecaudate heads demonstrates marked loss of posterior white matter, with reduced volume and increased signal intensity. The anterior white matter is spared. Features are consistent with X-linked Adrenoleukodystrophy.
Leukodystrophy is group of disorders characterized by degeneration of the white matter in the brain.[1] The leukodystrophies are caused by imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin in the CNS is produced by oligodendrocytes.[2] When damage occurs to white matter tissue immune responses can lead to inflammation in the CNS, along with loss of myelin.
The word leukodystrophy comes from the Greek roots leuko, white, dys, lack of, and troph, growth. Thus leukodystrophy describes a set of diseases that affect the growth or maintenance of the white matter.


Specific leukodystrophies include (ICD-10 codes are provided where available):
xenobefantosis (G70.3)


Leukodystrophies are mostly inherited disorders. They may be inherited in a recessive, dominant, or X-linked manner, depending on the type of leukodystrophy. The individual articles on each leukodystrophy will describe the particular pattern of inheritance for that disease. There is also a fact sheet describing the different genetic inheritance patterns available from the United Leukodystrophy Foundation.[3]
There are some leukodystrophies that do not appear to be inherited, but rather arise spontaneously. They are still caused by a mutation in a particular gene, but it means that the mutation was not inherited.
Known aggravators of leukodystrophy symptoms include radiation and certain chemotherapeutic treatments for cancer.


The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing and behaviour. There is often a slowdown in mental and physical development (though full, lasting cognizance has been observed, most notably in the case of Hunter Kelly, see 'Public Awareness'). Symptoms vary between specific types of leukodystrophy, as well as between individual patients, and may be difficult to recognise in the early stages of the disease.

Tuesday, July 8, 2014

Hunter's Hope Family Symposium

There are times when I have no one to turn to. I do not have another family going through what I am going through near me. I guess in a way that can be considered a good thing. I feel as if I have a whole other world that I can visit when I go online and "talk" to parents of children with Leukodystrophy. They just aren't tangible.

I turned to the Hunter's Hope foundation a couple years ago when we were first given Hailey's diagnosis, but I didn't get invested in everything they have to offer for one reason or another. I finally decided that I need to emerge myself in this disease and find out if I am doing everything I should be doing. I enrolled Hailey online under their wall of fame but when I did so the information posted incorrectly. I received a phone call from Kathleen from Hunter's Hope and we began to speak and I shared Hailey's blog and Facebook page and we talked as if we have talked before even though this was the first time. I felt very comfortable with her. When I signed Hailey into Hunter's Hope, we received a welcome package and in it were books and a stuffed bear. One of the books was titled, Without a Word, by Jill Kelly.

Jill Kelly is married to Jim Kelly who used to be the quarterback for the Buffalo Bills. Their son Hunter was diagnosed with Krabbe Leukodystrophy at only a few months old. The book was Jill's journey in having to understand and deal with her son having this terrible terminal diagnosis. It's a great book! The feelings she goes through you go through as well. In the book Jill mentions starting the Hunter's Hope Foundation and also mentioned a Family Symposium to bring families affected by this disease together along with Doctors, scientists, and board members.

At another time that I spoke with Kathleen she had mentioned the family symposium and told me that she knows this will have a wonderful effect on our family if we were able to attend. The big road blocks standing in our way was the financial aspect and then the location. The symposium is in Buffalo. I don't think I could get any further East. But on a positive note, I would LOVE to take Hailey to Niagra Falls!

I debated with Josh. I really want to go. Can Hailey travel that much? What will it be like? Is this something that we can do? I went back and forth and back and forth and we decided that this is an opportunity to bring us as a family together with other families that know what I'm going through, that have either been through it, are going through it, or will go through it. We can't not take this opportunity! I know that our situation of where Hailey is with Leukodystrophy can be different then where the other families are, but the stages of Leukodystrophy's are different for all kids.

I worked with Hunter's Hope and with Kathleen and we were able to get everything taken care of so that we are going to be able to attend. Hunter's Hope has been amazing in providing us with this opportunity. I will not be able to thank them enough. Some of the kids that I read about online or on Facebook will be their and these kids are celebrities in themselves and I can't wait to meet and bond with them all.

Just when I thought that this couldn't get anymore thrilling I was told that Hunter's Hope would also like to have us have a family photo shoot!! I haven't had any professional photos done of Hailey since her diagnosis. The whole experience of getting family photos was amazing! We had an wonderful photographer from Photo Studio Vegas and she gave us such a great gift! I loved every photo she captured of Hailey and then she wrote about her experience with us and I loved her even more. She really saw more then a sick kid, she saw who Hailey truly is.

Hunter's Hope doesn't want to ever have to turn a family away, so through donations they can keep having families affected by Leukodystrophy attend.

I am really excited about this trip! This is a good thing. I honestly can't wait to get back so that I can tell you all about it! We really want to thank Kathleen and Hunter's Hope for this great gift that we will truly cherish. It's going to be amazing!! THANK YOU!!!!

Sunday, July 6, 2014

Sharing Hailey's story and her hugs.

We LOVE our Make a Wish family and Hailey lights up whenever you mention anything Make a Wish. We have always said that we are here to help in any way we can when it comes to helping other kids get their wishes granted. 

We were very excited when Hailey was asked if she would represent wish kids at a check presentation from Conifer Health. 

The presentation would take place at the Venetian Hotel and Casino and we proudly wore our Make a Wish shirts. Yes you get lots of stares and sad faces as you walk by, but that's just because people are only seeing the one side of the story. There are other people who will see you walk by and wave hello, or give a smile, even a high five. Those are the people who know how brave these kids are and how at times, life can be very rough. These kids need the positive gestures and Hailey is a child who loves to share her story and her hugs. 

The check from Conifer Health given to Make a Wish Southern Nevada! 

After the check presentation we shared a little bit about Hailey, her disease, her wish, and how we have been impacted by the Make a Wish Foundation. 
We remember that when we were in the process of deciding what Hailey's wish would be, we were in what Doctors told us was a "time crunch." Doctors told us that Hailey was at the point where things were just going to go downhill and Hailey would get worse and worse. I was so apprehensive when it came to Hailey getting a wish, but it turned out to be one of the most memorable and happiest week of our lives. Seeing Hailey give every character she saw a hug really changed something in her. Hugs are good for you and Hailey LOVES them!

I have read a lot of articles on the benefits of hugging. This one called 10 Reasons Why we Need at least 8 Hugs a Day is a great one!  

When we met all the people at the presentation from Conifer Health we wanted to make sure that they new how important Make a Wish has been to us. I told them that they could read all about our trip and what we did and how it has impacted us on our blog. I do very well when it comes to talking about Hailey and what we've been through with the misdiagnosis, traveling to different states to find the right doctor, hearing and learning about diagnosis, Leukodystrophy and how there is no cure and no treatments, but when I talk about our wish trip I get very emotional and I have to stop before I cry so I tell people to read about it on the blog. We wanted to give out some Hugs for Hailey bracelets as a small thank you. 
Hailey gave everyone a bracelet and a hug!
A few days letter I received an email saying that Hailey had made a huge impact on everyone from Conifer Health and there was even an article published that mentioned Hailey.

You can read the article HERE

It really makes us happy that we can share our story and share how important a child's wish is to them. We love being a part of the Make a Wish family!

Thank you to Make a Wish Southern Nevada for this opportunity and the photos and to Conifer Health!