This trip was so special to us. I can not wait to tell you about it! Everyone who asks me how our trip was might as well just pull up a chair and get comfy. I think blogging about it would be the best way to really SEE how great it was that we had this opportunity. Let's get started!
When I told Hailey that we were packing our suitcases because we were going to be meeting some new friends she told me that she was going to pack her own suitcase. I got it down for her and let her fill it up. When I looked inside and then looked at her she was very proud of the job she had done.
At 1:00 our shuttle arrived and Anna from Hunters Hope met us. There were already people on the shuttle and looking back it is so odd to think I didn't talk much on the shuttle because I didn't know anyone, but if I'm ever anywhere with any of those people again I'd be talking non stop. I grew to love so many people so fast on this trip!
Honestly I don't know why I was so afraid and nervous. I didn't feel any of those things! We sat at our table right next to a family that when I saw them I wanted to say, "I KNOW YOU!!!" I knew them because of Facebook and the page they have for their daughter Anna. I knew most of the people through their pages. It was their first year attending too so I tried to follow their lead.
At the welcome dinner after we ate we went around the room and introduced ourselves. I wanted to be the one to speak to everyone but Josh took the mic and didn't say any of the things that I had been planning on saying for a whole week! I didn't want him to make a bad impression of us!
After the introductions I mingled around and introduced myself to as many people as I could in the short amount of time we had before bed. I was exhausted and I wanted to stay up late but it wasn't going to happen. Traveling, waking up early, staying up all day, then having to wake up early the next day wasn't going to work. I figured I'd get myself rested and then I'll be adjusted to staying up.
Hailey wanted to go mingle as soon as we sat down at the table, but we managed to hold on to her until after the introductions and then she was off! She had NO problems making new friends!
I'm not going to lie and say that Hailey didn't bring up a lot of questions when people saw her. She did, and I knew she would. I was kind of afraid people would look at us and say, "she doesn't look like she has Leukodystrophy." because that's what I get when I am at home and I explain Hailey. I did deal with Hailey when she was in a semi-vegitative state, but only for a short time. Hailey didn't walk, talk, lift her arms, hold her head up, sit up, eat or swallow food, I had to suction her, and I had to rotate her at night so she wouldn't get bed sores, and that lasted for a year. She is still tube fed and she uses diapers as well. I know what it's like to care for that type of a child to a certain extent. I thought people would be mad at me. That's just me being crazy though. I heard people tell me that knowing Hailey's story and seeing her gives them HOPE. They love her ambush hugs and how she holds their children's hands and kisses their foreheads. I'm so glad Hailey brings them comfort. I think the most popular question in regards to Hailey was, "What did you do to get her back?" I hated having to say, "I don't know...." I do all the therapies, PT, OT, SLP. We do Hippo Therapy (horse therapy) I use the DoTerra Essential oils, we see a NUCCA Doctor. I can't pin point what it is about Hailey and the type of leukodystrophy she has that she is the way she is.
So many great people support Hunter's Hope. Hailey went around hugging people and I told Josh, "Hailey's trying to hug someone who's in the middle of a conversation, can you go get her?" Josh says, "that's not just someone. That's Thurman Thomas, Hall of Fame Running Back for the Buffalo Bills!!" He didn't mind at all. He hugged Hailey right back!
I NEVER felt uncomfortable around anyone ONCE. The families that have been there before were picking up like there hadn't been a whole year in between the last time they saw each other. Everyone was taking turns holding each others children. I even met parents who's children have passed away. I remember telling someone before I left that the symposium was open to all families who have dealt or are dealing with Leukodystrophy. They had said to me, "why would you want to be reminded of your child when they aren't there?" I know why they go and I'm so glad they do. They are such a comfort. They know what it's like for the families that this is happening to. They are amazing people. I learned you NEVER stop thinking about your child. It's not like you forget and then going to this symposium you suddenly remember again. They have people to talk to that know what they are going through. We are a family in the end.
After dinner we had to go to sleep, I couldn't keep my eyes open and I was afraid I'd stop making sense. Tomorrow was going to be the first day of the conferences and Hailey was going to be able to go to Kids Kamp!
The next morning we woke up and got ready for the day. First was breakfast then I'd take Hailey over to Kids Kamp. I worry when I'm not around Hailey. I have panic attacks when she goes to school everyday and I'm not right there to watch over her to make sure she was safe. I had such a calm feeling when it was time to take her. I just told them Hailey might need a little extra help and they were fine with that. I never felt worry for her. She had so much fun! She'd be upset if we came in to change her diaper as if worried we were going home.
I got the opportunity to speak with 2 doctors. After I told 1 of them how we were told Hailey has an unspecified Leukodystrophy I told him a little more info and right away this is where I am a little shocked....
The doctor mentions that Hailey may have ADEM Leukodystrophy. Um? Sound familiar? Hailey was originally diagnosed with ADEM. I thought those were 2 totally different things? I thought that ADEM mimics Leukodystrophy. I looked it up on the Hunter's Hope Website and there it was, ADEM Leukodystrophy. I told him that whatever information or medical records he needs we are willing to give him. I also heard from the families that were there to look up and go to a Doctor Escolar. Such crazy information! I just hope we get the opportunity to meet with these doctors so that we can know everything we need, to help Hailey.
The conference part was so informative. Did you know that there are only 2 states that test for Krabbe Leukodystrophy during a newborn screening? The newborn screening is that heel prick test that all babies get at birth. They could find out if a child tests positive at that time. Why don't all states test for it? Good question! Hunter's Hope is making it their goal to have every state add these tests to it's newborn screening. If there aren't people who will fight for this to be done it will go un tested. If a newborn tests positive for Krabbe Leukodystrophy or many other Leukodystrophys before they become symptomatic there are treatments that can be done for them. You can read about Newborn screening tests on the Hunter's Hope Website. Please take a moment to read it.
You can even read this article about how this simple newborn screening saved the life of a little girl we got to meet at the symposium.
If you get a chance please go to the Hunter's Hope website and look through it. It has great information for anyone who has questions about Krabbe or other Leukodystrophies.
Like and Share the pages of the kids that have Facebook pages. Everyone would love the support.
Thank you Hunters Hope for inviting our family to attend the symposium this year. I will never forget the wonderful experience we had together as a family!
***Update taken from the Hunter's Hope Facebook Page:
This Sunday, August 3rd, will be an exciting day... First, the Kellys share their story on ESPN's Outside the Lines at 9am EST. THEN, during half-time of the Bills vs. Giants Hall of Fame Game another story featuring the Kellys and some of our#Leukodystrophy families will air! The game starts at 8PM EST on NBC. Please tune in and help spread the word!! #NBCSports #ESPN #BuffaloBills