Saturday, April 23, 2022

How to Navigate the Website


Here you will find the story of how our journey with Leukodystrophy began. 

When Hailey was a baby I wanted to keep a diary. When Hailey got sick I decided to open my diary up for others that may have a medically fragile child or for anyone who wanted to keep up with us. Our story, our struggles, our daughter. It was a place where people could go to find out how Hailey was without having to ask me. 

Now that things are more calmed down I don't write as much anymore. Hailey has had her g-tube going on 10 years. Hailey has her Pacemaker and that's going on 7 years. This website is where and how things started. Where we are now is mostly on Facebook for a quick "How are we doing?" day to day type of thing. 

So for the HOW DID THIS ALL START? This is the website for that. For the HOW ARE THINGS NOW? That is on our Facebook Page. 

I know I'm getting to the point where we will phase out Facebook too, maybe turn this blog into a pamphlet/book one day????

But a lot of people who look up leukodystrophy find us and find resources they will need to navigate their journey. 

Leukodystrophy has come so far in the last 10 years and there is so much more help out there now. I know our story is very interesting and what we had to go through is pretty incredible. When people find our website and tell me what they got from it makes me happy. I'm happy we can help others. Let others know that they aren't alone. Things can be horrible, but they can also be so much worse. 

Start at the top and read how it all began. Then follow the journey to where we are now. 

Grab some tissues and read on. 

Friday, November 19, 2021

Our Etsy Shop is Stocked!

We are excited to be doing our custom ornaments again this year! We have also added a WHOLE bunch more to the shop! Please take a moment to check everything out and be sure to check back on Black Friday to see what specials we have! One of them will be FREE SHIPPING for orders $35 and over!

Monday, February 3, 2020

Playing Ice Hockey

Yesterday was such a fun night for our family! I signed Hailey up to participate in a ice hockey activity with the Paralympic organization! Her adaptive PE teacher invited us to attend knowing Hailey would enjoy it. She had SO much fun and even made a goal! It was great to see her be able to “ice skate” and be with other children of different abilities. I (mom) have never been in ice skates before had to learn pretty quick so I could take her on a few laps around the rink. Hailey was hesitant at first but when she saw other kids out there and waving and smiling she wanted to give it a try. We spent about an hour and a half on the ice with smiles the whole time. What a great organization!

Tuesday, October 29, 2019

Trunk or Treat at the Ronald McDonald House

Hailey had a great weekend! I don’t know who invented trunk or treating but they deserve a high five from every mom that has a medically fragile, disabled, or special needs child. On Halloween Hailey can not go up to houses and ring the bell like a typical child. Nearly every house (in our neighborhood especially) have steps and Hailey is either using her walker or her wheelchair. It’s not easy. Also there aren’t too many events for kids like Hailey. She can’t handle strobing or flashing lights, she can’t climb up big bouncy slides, and maneuvering through chaos and crowds is very uncomfortable. 
We’re so thankful that Hailey has friends in the community that sees this and invites her to be a part of their fun. Thank you to Ronald McDonald House Las Vegas and the RED Shoe Society for letting Hailey join your trunk or treat. She loved decorating our car and passing out HANDFULS of candy and then going around in her walker as well. It was a fun night for us as a family and we really appreciate it! 
Thank you to Ferell, Julie, Ashley, Buffy and everyone else who put together and participated in such a great event. ❤️ 👻 🎃 🍭

Friday, October 18, 2019

New Items in our Etsy shop

While we are already preparing for our famous ornaments we have also added a few new items to Hailey's Etsy shop. One of those things is recycled books turned into journals, or autograph books or even sketch books!

Check them out at HERE

Bathtub safety rails

Through Amazon we were able to order some portable handrails for the bathtub for Hailey! It has made a world of difference. This is an example of something I would say is a medical necessity for safety reasons that insurance does not pay for that we have to pay for out of pocket. Thank you to those of you who send us Amazon gift cards to help with this cost. 

For some fun surprises or for gift cards Hailey has an Amazon wish list here: