Thursday, October 16, 2014

The Little Mermaid - Take 2


So in August when we had taken Hailey to see the Little Mermaid in Tuachaun we got rained out and they exchanged our tickets for another show. We decided to go on Columbus day after Hailey got home from school. We weren't going to stay the night so it would be a quick trip!

The show was a lot of fun! Even more fun if you are not drenched in the middle of intermission looking for shelter in your $3.00 poncho. 

After the show Hailey was Hailey to meet and greet ALL the actors in the show and she even got them to all sign her ticket. That was her favorite part. She loves to get autographs! 

 These were Ursula's Electric Eels! 

 This is Flounder - He's such a guppy :0P

 The stars of the show Ariel and Prince Eric! We sat second row and during the bows Hailey blew Ariel and Kiss and Ariel blew on back! Hailey was giddy! Ariel even brought it up when they met.
 A hug for Hailey!! 

Prince Eric was pretty dreamy!  

Ursula the Sea Witch was one of Hailey's favorites because she's purple!  

Prince Eric's Guardian - Grimsby and Scuttles. 

 Hailey as Ariel! <3

Sebastian the crab!  

One of Ariels sisters Adella. 



It was a great show and we had lots of fun seeing how happy Hailey was. I love being able to do these things with her. The more memories the better!! 

Tuesday, October 7, 2014

Student of the Month for October 2014

We were so happy to hear that Hailey was chosen to be Student of the Month at school. For a child who absolutely LOVES school this was a big treat for her. 

Her teacher gave us a Super Student poster to fill out together and that was also a lot of fun. It will hang in her classroom all month long! 


Some of the highlights were: 

  • Curious George and Fancy Nancy are some of Hailey's favorite books
  • When asked who was her hero she named her Leukodystrophy friends we met in Buffalo this year.
  • The symbol that represents her Super Power is the Blue Leukodystrophy awareness ribbon
  • What Hailey LOVES to talk about? Being a Make a Wish Kid! 
  • Favorite thing to do? Sing "Let it Go"
  • If she could make a wrong in the world right, it would be NO more sick kids!! 
Congratulations Hailey! We are so proud of you and how hard you work at school. We know how much you love being with your friends and learning new things! 


Monday, September 22, 2014

A new experience for Hailey


Josh had a great idea to share one of his favorite Las Vegas attractions with Hailey Saturday night. We headed out to the Bellagio to watch the fountain show. 


It's a great free thing to do. The song that played was, "Lucy in the Sky." Hailey was expecting a song from Frozen...Ha! 


Also at the Bellagio they have their gardens open to the public. They had some pretty huge pumpkins displayed. Anywhere from 600 - 1000 pounds.

I found these tree sculptures to be so amazing! Hailey wasn't a fan at first, but I told her to look at them smiling. I told her they weren't mean trees. There was one that blinked and talked. She was holding on pretty tight with that one.

I wish I was talented enough to produce something like this! 


I'm glad I asked to get a photo of us. I'm never in the photos! 


There was a wedding party walking through the gardens and one of the groomsmen found Hailey walking around and offered her a bouquet of flowers that were PINK!! Hailey was thrilled! We said thank you and gave him a card to our website. I love how Hailey makes these connections with her personality. The flowers were beautiful. 

Dad, Hailey, and Mom. It was nice to be able to get out of the house and do something new for Hailey. Show her things that are right in our backyard. I even showed her the Eiffel Tower across the way. I tried to teach her to say "Bonjour!" We can pretend that we are in Paris. I remember before Hailey was sick and all the plans I had for my child when she grew up. I thought to myself an awesome graduation from High School gift would be to go to Paris to see the Eiffel Tower. Something I've always wanted to do and I would love to share that experience with her. I kinda also want to go to Euro Disney...
Even if that dream is close to impossible, I still won't give up on that goal. Hailey I promise to try and take you to Paris with me one day. Maybe even before you graduate high school. 

We love you Hailey! 

Friday, September 5, 2014

First day of school - 1st Grade

Hailey is officailly a 1st grader! She was so excited to go back to school and better yet to ride the bus to and from home.
This year Hailey will have adaptive PE along with Music, Art, Physical, Speech, and occupational therapy. I can't forget Hailey's new favorite Library. She will also be taken out of her self contained special needs classroom and placed in general ed for reading comprehension. I know it may be difficult for her but I know she can do it and how ever it turns out, if she excels or not I'll be proud of her for trying. 


Nothing about working with the school district has been easy for me. I had fought for so long to finally get Hailey what she needs and what she is entitled to. This year she will have her same 1 on 1 aide to help with all her needs. They even have a walker in the class so that Hailey can move from class to specials and back and not depend on her wheelchair. Her wheelchair is there as a backup. She can get tired so easily. She comes home and I ask her a bunch of questions about school. I have her aide write down some details so that I can encourage Hailey to tell me about her day. 

At night after therapy and appointments her and I do homework together. She does fight me, but we work together and make a good team. I'm excited to see what she will learn and all the friends she will make.
Have fun my big 1st grader!!

Thursday, August 28, 2014

3 month trip to Utah. Here is an update


This past week we had went to Utah for Hailey's Rehab Doctor appointment. We go to Utah because there is not a pediatric rehab doctor in Las Vegas. The Rehab doctor manages Hailey's Baclofen medication and she is the one that would administrate Botox in Hailey's calves if needed. When we go we are traveling out of state, and staying in a hotel. Our insurance doesn't help with this cost.  Hailey hasn't needed botox in over a year but she has needed Baclofen. 
Here is what Baclofen medication does: 

Baclofen is used for treating spasm of skeletal muscles, muscle clonus, rigidity, and pain caused by disorders such as multiple sclerosis or Leukodystrophy. It is also injected into the spinal cord (intrathecal) for management of severe spasticity.

This doctor also manages Hailey's AFO's (Ankle Foot Orthotics) In the past we did try to have her AFO's done in Las Vegas and they were done incorrectly EVERY SINGLE TIME! That was unacceptable so the Rehab Doctor handles that as well as the physical therapist in Utah. The last pair of AFO's ended up stretching at the block (the block helps Hailey to NOT hyper extend her leg) this was the 2nd pair that did this. We finally picked up a pair that will help this to not happen again...hopefully.

At the appointment the Rehab Doctor was very impressed to see Hailey doing SO well. Again she took a video to show the neurologist in Salt Lake. I finally had spoken up to let her know that I feel as if the Neurologist in Salt Lake has lost interest in Hailey and her case. I feel as if he is telling me, Your child has a terminal disease, nothing you can do, have a nice rest of your life. Of course he has never said those words to me this is just how I am feeling. I do want her to report what I say to him. I don't feel as if he has listened to my concerns or questions. 

When the doctor and the physical therapist put Hailey's new AFO's on you could really see the difference in her walk. Right now, until she gets used to it, her walking is a little unlevel and she has a very wide gate to be balanced. When she uses her walker she does a lot better. When she walks without her AFO's and without her walker she is VERY unsteady, has a very wide gait, and I feel as if I'm playing catch. She doesn't stay upright for very long without them. These are a very necessary piece of medical equipment. 


During the appointment the doctor really stretches and sees what Hailey's range of motion is. I remember the first time we had went to this appointment and Hailey was SO stiff and she would scream and I hated watching her struggle. Today is so different from 2 years ago. Hailey's range has improved so much. Hailey works so hard in physical therapy and when she goes to horse therapy. We can see a difference.
You can't go to the doctor without getting a prize, but this time I had a VERY special prize for Hailey. Hailey loves My Little Pony and she loves blind bags. Something about not know which pony you're going to get is very thrilling to Hailey. There are toys called Fash'ems. For the most part you can purchase these at a store called Justice, but our store NEVER has these available and when they do they are $5 each when they are on sale!
I happen to have 2 Fash'em capsules in my purse just for Hailey. When I gave them to her for being a good patient the smile on her face was priceless! 


Such a little toy that brings such a BIG smile to my girl. The surprises didn't stop there! After the appointment I surprised Hailey with tickets to see The Little Mermaid in Tuachan. When we did leave the appointment and walked to the car there were puddles of water everywhere! It had rained while we where inside. The weather had called for scattered thunderstorms...Oh NO!!! I had my fingers crossed that would be the end of the rain....

Hailey was one happy girl when we arrived at the show. We had excellent seats and right away Hailey started with introductions to all who sat with us. Here is her conversation: 

Hailey: Hi I'm Hailey, This is my mom, mom. Mom, say hi!
Me: Hi! 
Hailey: This is my Josh. Josh is a boy. Josh say hi! 
Josh: Hi! 
She is our social coordinator. I love that she makes friends wherever she goes. You can be 8 months old, 8 years old, or 80 years old. Hailey's going to befriend you.  


The backdrop to the show is AMAZING. You are placed in a mountain. 

Right before the show starts the stage FILLS WITH WATER!! Yes! Fills with water! The music starts and then Ariel pops up. Hailey is frantically waving and is smiling ear to ear! 

Then...we hear Thunder, see lots of lighting, and then it starts POURING rain! On the tickets it says that if the show is cancelled BEFORE the intermission you get your money back. If the show is cancelled after intermission you get a voucher. It is POURING and they just keep on going with the show until intermission and then they cancel it. It felt like an interactive play...
 Due to inclement weather the show was cancelled. I was SO bummed. Hailey just thought the show was over. We were soaked!


We did have time to take a few photos of our princess. 

I love this photo! 

One of the people sitting next to us was an instant friend of Hailey's! She is a teacher for special needs children in California and came down with her parents to see the show. It was great meeting her and her family!! 
So we got in the car and drove to the hotel so we could dry off and get to bed. Overall the appointment went great. I'm very glad we finally got Hailey's AFO's correct! I'm bummed about the play and I'm waiting to hear about what our options are going to be. Hopefully we get to see the show in it's entirety but if we don't I know Hailey was content in what she did see. She really loved the music and the characters!

Next time we go we will have to also see Hailey's cardiologist as well as the rehab doctor. The cardiologist ALWAYS makes me so nervous. She is the one person that has not had great news to report back to us. Hailey will need another holter monitor and EKG. She's not going to be a happy camper. 

I better make sure I can get my hands on a few more Fash'em capsules!

Friday, August 1, 2014

Hunter's Hope Family Symposium 2014


Amazing! 

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.
 I knew that the flight was going to be a long one and that Hailey wasn't going to sleep on the plane so  I had a few surprises up my sleeve. Hailey LOVES blind bags. Any will do, but Josh's mom found Care Bear ones and these were the biggest HIT! Every 1/2 hour Hailey was given a new bag to open. Josh's mom really hit it out of the ballpark with these and they arrived the day we left. Good timing!
 At the airport we checked out bags and for Hailey's medical suitcase they marked it with FRAGILE stickers all over. Hailey got sad she didn't get a sticker so we found one for her:
 The flight wasn't terrible at all. Just long. Plus I was nervous, so that didn't help. We were due to arrive after midnight then we'd get a hotel and be off to the Symposium the next day. I've never been to New York before and I was happy I was getting to do so.
 I would say we woke up bright and early but our body clocks were all messed up. Josh couldn't sleep, he woke up early. I couldn't wake up and probably didn't get out of bed until after 10 (which was really 7 NV time)

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!


 Once we got to the Lodge I finally got to meet Kathleen! She was the one who told me about the symposium and help me get my family there! We checked into our room and got ready for the Welcome Dinner. We all wore our #KellyTough shirts and we were excited to meet all the families. We had some time before the dinner (about 6 hours) so we went to the restaurant and when we asked for a table the hostess asked us if we wanted to go and be seated with the other families. We did want to sit with them so she showed us the way. It didn't take long at all for someone to notice that we were new and introduce themselves and then that got the ball rolling. That and Hailey going up and peaking in every wheelchair or stroller. Right off the bat we met 5 families and I couldn't wait to hear their journey.
I didn't know what to expect. Was I going to be able to meet knew people and make new friends? Was I going to feel included and be accepted? Everyone who knows Hailey knows that she is a social butterfly and she is very big on HUGS! Were people going to be accepting of her and her ambush hugs?

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!

 She wanted to play with all the children and it warmed by heart. Hailey didn't see any children with a disability. She didn't see oxygen tubes and tanks, she didn't see suction machines, and wheelchairs. She just saw kids. Kids she wanted to be friends with. She wasn't afraid to touch, kiss, or hug anyone and I LOVE that about Hailey.
 It surprised me that she did come up to me once and she was talking about a suction machine. She said, "when I was a baby you did that with me." That's true. I did do that. She remembers that?! How? Why? She met children with G-Tubes like hers and made sure she showed everyone which belly pad she was wearing and she wanted to see theirs.

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!


Hailey found her way over to Jim Kelly and he got a hug and she hung around him like she was part of his family. He didn't mind at all. He welcomed her over and it was so great. 

 They had a wall of photos of these amazing children and Hailey looked at it over and over. Her photo is on the right side of the number 2.

Hailey also found Jill Kelly and I felt like I knew her. I read her book and I really wanted to thank her for doing this and being here for our families. 

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. This test is so important. It can even determine if the child is a carrier of the disease. 
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.


After the conferences during the day we picked up Hailey from Kids Kamp and took her down to have a Family Photo taken of the children at the Symposium along with Jim, Jill and Erin Kelly. After the photo it was free time to mingle before dinner. Hailey made her rounds.

 Every child was given a Buffalo Bills hat and Hailey wore hers with a big smile on her face. 

Hailey with her friend holding hands and smiling! We love you Tenley! 

Josh Elliot was on property with NBC Sports doing a segment on the Hunter's Hope Family Symposium which will air during the Half time show of the Hall of Fame Football game. Everyone MUST watch. 
Hailey made sure Josh got a hug as well! 

 Hailey found Jill Kelly again and I love that you can see the love from her embrace. 

Hailey was so happy she was able to hold her friend Addilyn

This is Hailey's friend Lauren! Lauren has the coolest kicks in town. Lauren has beautiful eyes and she instantly tugs at your heartstrings. Lauren was always first to get hugs! 

We caught Josh Elliot again and Hailey ambush hugged him. He was completely understanding and didn't mind a bit! 

Baby Anna! Hailey gravitated towards Anna whenever she was around. Anna always had a very stylish bow in her hair. Hailey could talk to Anna for hours. The moment I held Anna I instantly fell in love with her. I couldn't stop looking at her sweet face. 
 All the first time dads are inducted into the Hunter's Hope family by wearing a very special sweater and passing it along to the next new dad. This was Josh.
 This sweater reminded me of that movie "Sisterhood of the Traveling Pants." This sweater fit every single dad that tried it on perfectly. One thing I wanted Josh to get out of this experience was that I wanted him to create bonds with other men so that if he ever needed to be able to talk to someone he could. I hope he was able to get that. 

The next day was a very emotional day. VERY! After lunch they had separate sessions for the women and the men. We were able to get together speak about what we wanted to speak about with no judgment, just support. 

After the separate sessions we participated in the EveryStep walk. We as families raised money to help support this amazing organization. We walked together. We wore our shirts that support our children and their courage. 
This was my favorite shirt! 

Some people only dream of Angels. 
I have held one in my arms. 

Beautiful!


We all participated in the EveryStep Walk and afterwards there was a balloon release for all the children who have passed. It was very emotional, and the balloons looked beautiful in the sky.


Lots of hand holding and hugs.

Another family that we met that I follow on Facebook was Lily. We love Lily's smile!! 


Hailey crossing the finish line! 

Thumbs up for a job well done! 


These 2 little girls are so precious to Hailey. They were among the first children Hailey met at the symposium. 

These 2 families made me feel like I belonged immediately. I can't thank you guys enough for the conversations, the laughs, and the hugs! 


Terry and Scott stayed up late talking with us. They have an amazing spirit and they are some of my favorite people! 



Friday was also Josh's birthday and one of the best gifts was getting to see his brother and sister in law, Adam and Megan. Hailey was all smiles when she saw them. She made sure she introduced them to everyone there. 
After the meals there were raffles and when Hailey heard her name called it was as if she won the lottery. She was so happy she won a prize! Then the next day she won again! She won a football signed by Jim Kelly and she thought it was so FUN! 

The next morning we had a free family day and we decided we are SO close to Canada we have to go see the falls! Adam and Megan had rented a car and we were off to see this amazing piece of nature.



 It was a quick trip, we wanted to get back and get ready for dinner. There was a talent show for all the kids and this was everyone's favorite part! 
 After dinner before the show, Hailey made her rounds and made sure to see how everyone was doing. She even stopped by to help with bottle duty. Everyone included Hailey and she was NEVER turned away for bothering them. 

Then it was time for the show. Hailey absolutely AMAZED me! She was so fierce in her performance. I had no idea she had this in her. If you haven't seen the video it is a MUST and it is posted on Hailey's Facebook page. Every time I watch it I still get teary eyed! 


I love this picture of Hailey and Lauren!! My heart swells looking at it!

After dinner we were able to move downstairs and just sit and socialize. I tried to talk to every single person there, but I didn't do a very good job at it and I'm mad at myself for that. It was our last night together and I just wanted to make the most out of it. It was getting late and we hadn't packed and it was time for Hailey's medication. Josh said that he would take care of it and that I could stay. That was very awesome of him. Before Hailey left she wanted to make sure she said goodbye to everyone she met. 
Seeing her love for everyone is so touching to me. 



(Nice Photo Bomb Kevin!!! LOL!!!!) 






 Saying good night was very hard, thinking about it being another year until everyone is together again is even harder. 
The next morning Hailey woke up and was very un-steady she couldn't walk without falling and my heart dropped. The combination of everything we had done and not getting enough sleep could have led to this but we have been through this before. There was a doctor there but we wouldn't have time to see him before we had to leave to catch the plane home. We kept Hailey in her stroller and things ended up not being her usual ataxic episode. Today she is able to walk but her gait is wider then usual. We are just going with the flow. It's hard to hear that everyone has a neurologist that they can call up and make an appointment with. That cares about their child and their case and we don't. I keep wondering if we belong here in Las Vegas? 

This picture is of some of the amazing people who work for Hunter's Hope. Thank you guys for all your hard work and putting this amazing event together! My one suggestion to you is that you stand at the front of the door when you meet families and say, "Welcome to Hunter's Hope, Here's your complimentary box of tissues." 



Just an FYI. I was given this card from the TSA agent who told me that the next time we fly we can call to set up a passenger support specialist to help with getting through security. He said every airport has one. This is great information and I had no idea this was available. Well now I know and I want to share this with you! 



I can't believe we were given this opportunity. So happy I could meet these families, and doctors and especially the children. I'm so happy I can keep in touch with everyone on Facebook. It will make the next year a little easier to wait for.

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!

#KellyTough



***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