Sunday, July 17, 2016

July 17th was Diagnosis Day.

Four years ago on this day we were in Salt Lake City at the Western Leukodystrophy Clinic. We had an appointment with a neurologist who had more knowledge of Leukodystrophy then the Neurologists in Las Vegas.

I have wrote about this before so I won't repeat myself, but this was the day we were told that Hailey had Leukodystrophy. He couldn't tell us which specific type Hailey had, but from reading all of the past years MRIs he was certain this was what Hailey had.

Fast forward 4 years later to today and we are only a tiny bit closer, we may even have a specified type of leukodystrophy now.

We wanted to verify with a neurologist if Hailey did in fact have ADEM Leukodystrophy. This type of leuko checks a lot of boxes for Hailey, but not every single box. We have yet to speak to or find a neurologist that specializes in Leukodystrophy look at Hailey and review her blood tests and MRIs. We have had 3 out of 9 "guess" that if Hailey had a Leukodystrophy it'd be ADEM which is: Acute Disseminated Encephalomyelitis

We have also done many genetic tests and have only come upon mutated genes for Hailey. There were a total of 4 that we were told about. One that is VERY similar to leukodystrophy but we have not been told if definitively. It's confusing because when the neurologist look at Hailey's MRIs they know she does have leukodystrophy, but since there are SO many different types and so many new and undiscovered leukodystrophies we are left in the dark.

In the end I guess it isn't SO important that we know, but I would like to know what else to expect. When Hailey needed a pacemaker was it because of the leukodystrophy? I don't know of any other Leuko children that have a pacemaker, but we do know that children with leukodystrophy do have issues with their organs since the brain controls everything. Hailey's cardiologist would love to know more about what had caused Hailey to need a pacemaker and she asks us overtime we see her if we have any new information.

So can I or should I go with ADEM Leukodystrophy as a diagnosis? Is there a test that can be done to tell us if that is the type she has? Is there a neurologist that will help us? We don't know. We still don't have answers, but every July 17th these questions really stand out to me and I wish I had answers.

(Salt Lake City 2012 We had no idea what we were in for...)

Sunday, June 5, 2016

2016 Hunter's Hope Family Symposium

The 2016 Hunter's Hope Family Symposium is right around the corner! At the end of July we will take Hailey to Buffalo so that we can spend time with other families who have been affected with Leukodystrophy. 

The time that we spend at the symposium is so incredibly precious to us. The very first time we attended I came back so refreshed and re-energied. I wrote about my experience HERE and I urge you to read through it. It's really the only way I can express how much we loved being a part of this extended family we have found. 

It's difficult to explain the feeling of inclusion, a place where there is no judgment when you have questions that you are afraid to ask, or feelings you aren't comfortable sharing with friends and immediate family. At the symposium these families KNOW what everyone is going through, what you have been through, and what you will go through. 

Last year I was in a panic because I was on a plane with my family and I noticed that I forgot Hailey's adapter for her g-tube, a necessary part of how we give her food and medication. I was going to be 4,000 miles away from a very important piece of medical equipment. I didn't want to post on my personal Facebook page because I worried about people thinking, "wow, she's a terrible mom forgetting something so important that her child needs!" So I asked my Leukodystrophy family if anyone had an extra adapter I could have and I got TONS of replies telling me they could help, and to not feel bad. If I was going anywhere else I'd be in big trouble, but going to the symposium I was covered and not judged. I was still embarrassed, but I was so happy it all worked out. 

Going to they symposium is something I feel we need to do. We need to be there, but it is so incredible expensive. The average cost for a family of 4 is $5,000. 

For families in attendance, meals and accommodations are paid for by Hunter's Hope. Travel arrangements to and from the event are the responsibility of the family but travel assistance is available for qualified families unable to cover these expenses. Donations made to Hunter's Hope help with these costs along with people who are willing to sponsor families. Any amount is welcome and appreciated.

I wanted to post a few photos from past symposiums that we have attended. These families and these children are so loved. Some children that were there the year before aren't there the next. Leukodystrophy takes the lives of these children, but we remember the times we held them, and kissed on them, and loved on them. 

I had said before that Hailey does not see disease or disability in any of these children. She goes up and talks to them, hugs on them, holds their hand, rubs their cheeks, she LOVES all these amazing children and their families. One thing I did notice is that Hailey also changes her voice to be softer and more gentle when she speaks to them. It's adorable! 

Hailey loves to mingle and she is such a social butterfly. She introduces herself to every single person and sometimes even joins them for meals instead of sitting with mom and dad. She has always been welcomed and I have never felt as if she was in the way. She gets to attend Kids Camp while mom and dad are at the symposium part and she LOVES it. They have activities planned for all the kids and if she needs help there is always someone by her side.

There are many ways you can help us attend the 2016 family symposium. We have set up a Team Hugs for Hailey page for the Every Step walk we will participate in while at the symposium. You can click this LINK to be taken to our page! ANY amount is appreciated, and you will know and see what your donation did for us. Our goal is at least $2,000 and I HOPE we can meet that goal.

We are counting down the days until we see our Leukodystrophy family again and Hailey is ready to give out some hugs!

Friday, May 13, 2016

Hailey's Birthday!!

This weekend we were able to celebrate Hailey's 8th birthday! We had family, fun, and LOTS of surprises!! One being that for Hailey's Inside Out birthday party, Joy and Sadness came to party with us!! We had the party at a bowling alley and every time we helped Hailey roll the bowling ball she'd tell Joy that she, "did it!!" and Joy celebrated right along with her with such enthusiasm or JOY!! It was adorable! Thank you to Neverland Parties Las Vegas for showing up for Hailey! She loved it! 

It was such a great surprise to see Sadness and Joy! 

 Bowling isn't the easiest task for Hailey but she very much enjoyed the experience. We were also so lucky that her physical therapist was there to help us with the best way for Hailey to bowl safely. We'd help carry her 6 pound bowling ball to the line and she's roll it as hard as she could. The excitement that ensued when she hit any pins was contagious! 

For our table scape I had a lot of fun putting it together but it was difficult! There were no Inside Out plates, napkins, party hats, or favors to be found at the party store!! We did find napkins and plates on Amazon. The rest of the things were put together through some DIY hard work, and help from Pinterest! It turned out SO great though! 

 We have to thank Icing Smiles for another great birthday cake!! Thank you to our baker at Sugar Bees Bakery for doing such an amazing job on the cake!!

 Everyone complimented us on the cake! It was really so great and it tasted so yummy! All the kids were just in awe of it! It turned out better then I imagined! 
So this year we celebrated Hailey's 8th Birthday with Inside Out and we had a ton of fun. Thank you to all that showed up, that traveled from out of town, and that took time to wish Hailey a happy day! Thank you to those that sent Hailey a gift from her Amazon wish list and thank you to all who have bought shirts from our Booster Sale! We appreciate it all so much!! 

Happy Birthday Hailey!!

Saturday, April 30, 2016

May is Hailey's Birthday Month!!!

Tomorrow will be the beginning of many many celebrations and surprises for Hailey!!!
Tomorrow morning make sure to be up bright and early to be one of the firsts to snag your NEW Hugs for Hailey shirts!!
They have been improved and we are offering so many great NEW colors and styles!! 
Monday will be an exciting day because the commercial Hailey was in will premiere and run the whole month of May! Tuesday we have a special surprise for Hailey and it's something she's pretty excited to do and see, but it's all new and she doesn't know what to expect (neither does mom!)
We also have her Inside Out Birthday Party coming up and a couple more surprises up our sleeves. We are having adventures, making memories, and loving our sweet soon to be 8 year old!! We can wait to share the fun with you!

Sunday, April 17, 2016

We've decided on a theme

Hailey has decided that she wants an Inside Out birthday party! Of course just like last year the theme she picks is the hardest one to find! Last year it was Shopkins and that theme did not exist. Fast forward to this year and Shopkins are easy to find...
So I will be on the look out searching high and low for Inside Out party supplies. I have also updated Hailey's Amazon wish list and added some books. May is around the corner, wish me luck!!! 

Tuesday, March 22, 2016

Pacemaker Anniversary

Can you believe it has already been a year that Hailey has had her Pacemaker?? The whole thing is very surreal to me. I still find it hard to believe that my 7 year old has a pacemaker. In reality everything about Hailey is surreal, the leukodystrophy, the g-tube, our story in general, but we try to always focus on the good and celebrate when we can. Even if it's something small. 

When we asked Hailey how we should celebrate this big milestone. I think I could have guessed what she would say. She wanted to go to her happy place. Disneyland!! So we did! 

As soon as we got there I had the idea to turn Hailey's Mickey Ears around so that people could see her name. Every single person addressed Hailey by her name and she was in awe that everyone KNEW who she was! (Her name anyhow) It was magic! She said, "all my friends her remember me!!" 
"Yes they do!!" I said. Wink Wink...

 It's been 3 years but we finally found Peter Pan! Joy!! 
 When you find Peter and he tells us that we should go to Pixie Hollow cause the fairy's are waiting for us you go! 

It was our first time seeing Silvermist! 
 Tinkerbell is always fun. She always shares her pixie dust with Hailey! 

Roger Rabbit was there for the Annual Passholders to get to see. Hailey didn't know who he was at first but soon became a fan. When she introduced me and her dad, Roger went wild when she said, "this is my mom Jessica!" it was really cute! 

 The highlight of the trip was getting to watch the Pixar Parade. Magically a lot of the characters in the parade were made aware that Hailey would be in the crowd and where she would be. Hailey got a few extra kisses blown her way and some high fives as well. It was such a fun experience for Hailey. She was so giddy with excitement and I love that she was so happy. 

Our favorite characters were the Incredibles. We love those guys so much!! 

 You can't go to Disneyland without stopping by the Character Close Up with Anna and Elsa and NOT get a group hug! Hailey loves these guys! 

 We were so lucky that Hailey found her friend Kaylee at Disneyland and was able to spend the morning together! Riding on rides with someone other then mom and dad just makes the ride more thrilling! 

Baymax was another Annual Passholder meet and greet. I was worried about this one. Baymax was so popular there was a line just to be able to strand in line to see him. So I decided I'd do that while Hailey and her dad went to the Frozen Sign a long and then had some snacks. Hailey just watched Big Hero 6 and was pretty excited for this rare opportunity. 

As you know there are not that many rides that Hailey can go on for one reason or another so character meet and greets are what she loves best! 
During DJ's dance party Hailey also made some friends with the dancers, and they were so great with her. They held her had so that she wouldn't fall since she was still a bit shaky on her own from her last ataxia episode, and then invited her to say goodnight to DJ in his garage! This was so special and we appreciated the invitation. Such a great way to end the night! I always say that the cast members mean so much to us by these little gestures and then when I talk to them they thank me for letting them do these things for Hailey. They find such joy in being able to help a child smile like Hailey does.

My sweet Hailey always making friends! She met another friend named Max while waiting for Anna and Elsa and she instantly had a connection with him! They watched the parade together and then rode Buzz Lightyear!! They ended the night by taking photos by the castle as it was lit up so beautifully! We appreciate Kaylee and Max for showing Hailey the extra love. Best Friends Forever!! 
 The actual celebration on the Pacemaker came when we had Breakfast with Minnie and friends! Hailey was too excited. Instead of chasing down characters they come to your table! So great! 
 When you ask Hailey where she wants to go to celebrate anything she will NEVER not say Disneyland and that's fine with me. She is so happy when she is there! It really does bring some magic to her. All the things others do for her mean the world to us! 

Happy 1 year Pacemaker anniversary!! Here is to many many more! 

P.s. We'll see you soon Disneyland!