Happy Birthday Month 9!

Hayden’s nine month celebration was something spectacular! Guess what he got to do??? He went to the beach! Hayden has been to the beach four times in his wonderful nine months. We started our birthday celebration by dinner with friends. As you read in my previous blog, we celebrated rare disease day and nine months at Lilo’s. We had to wait on our dear friends Kelli and Clayton to get there. It is slightly unusual for them to be late. Guess why they were late?? They had to get Hayden a balloon and a bunny for his birthday! Hayden loved the bunny so much! He even punched the bunny until it fell to the groundJ Hayden also received a weighted puppy and blanket on his birthday. Brent’s cousin Mandy found them online. I must say that he seems to be really calm when playing with his puppy. He named his puppy Nichols. For all of my friends with disabled children, this is a great thing to try! Please message me for the website for the weighted blankets and puppies.

His "Aunt Kelli" and "Uncle Clayton" love to spoil their favorite little man!

 Happy Birthday Dinner with some of his favorite "Aunts"

 Nona and Papa sang Happy Birthday and gave him some really neat beach clothes!

 Meet Hayden's new buddy Nichols. Nichols is about 5 to 8 lbs.. This puppy is helping control his seizures. He also recieved the weighted blanket. They are used to help control seizures just like the weighted vest adults use!

Finally, March 1, 2012 has arrived! We are so BLESSED with another month to celebrate our largest Blessing! Hayden is our pride, our joy, and a true miracle! People probably think that I am silly for celebrating each month of life. ( WARNING: IF YOU THINK I AM SILLY WITH THESE LITTLE PARTIES, YOU WILL THINK I AM CRAZY ON JUNE 1^ST. I AM HOPING THAT HIS FIRST BIRTHDAY IS THE SUNNIES T AND BRIGHTEST DAY OF OUR LIVES)  In my eyes, I am so proud of each month that God gives me with Hayden. We woke Hayden up early and started his surprise vacation! We stopped in Jackson to visit with our friends at the radiothon. I must admit it was a wonderful feeling visiting the hospital without a doctors appointment. Hayden got to listen to his story on the radiothon and visit with some of his favorite friends. He was so glad to get hugs and kisses instead of pokes and needles. Thank you God for an amazing visit to Batson without any needles or tears.

Thank you to everyone who participated in the radiothon.  The hospital raised over 380,000 dollars. It was a very successful year. Hayden was so honored that so many people did donations in his honor. We had people call us and say that the people would say "Wow" This child has had a lot of donations in his honor today. Thank you so much for this! Also, Luxe gave a donation from 15 percent of there sales that day to Batson in Honor of Hayden. Thank you very much!

 Hayden loves Courtney and Amanda. These two girls make it all happen at Batson. Amanda is in charge of all donations. She appreciates all the things that the Delta are doing for the hospital. They love playing with the kids, entertaining the toys, and loving the kids. God is good for placing these girls in our lives. Courtney is the child life specialist on the third floor. She was so sweet and encouraging in July when we received the worst possible news. She saw at us our weakest moments. She definitely gave us some faithful encouragement!

 We even ran into Katy and Shannon. We love Katy. She is our speech therapist. In October, she did a swallow test, we just knew that he would fail! He passed! She has helped us learn how to feed him! We are so blessed to have met her. Shannon is one of our awesome Pallative Care Team nurses! She is there for us 24-7! We are so blessed to know her!

Next stop, Destin! We were kind of nervous about traveling eight hours with Hayden. I guess Hayden was so excited that he chose to sleep the whole way! He was perfect! He started crying about five minutes before we got to the condo! It was a gorgeous day in Destin! We decided to take full advantage of being together as a family! The weather was cool. We were not going to be sitting on the beach all day. Instead, we were able to relax and spend time as a family.  Hayden received lots of love and laughter! Thank you God for my perfect little family!

Look how much Hair I grew??? I really think it grew on our weekend get away!

Silly Daddy! He suprised mommy with a good laugh by taking this picture!

 Hayden love his 12th floor view! He was so glad to be "home." The car ride was BORING!

Water is one of Hayden's favorite things. Since it was cold, we spent a lot of time swimming in the jacuzzi!

 Relaxing thats what vacation is all about. (Notice, Nichols the Puppy is on top of him, giving him a sense of security!)

 Did we have pretty weather? Not really but we loved our family time!

 We relaxed a little more..... Now tell me how you think Hayden's nine month birthday went??? I would say SUCCESSFUL!

The last day of our vacation was beautiful! Hayden really hated to leave. He was begging his daddy for one more day! Sadly, daddy had to go back to work. We will do a longer vacation in the summer. We must admit it was the best weekend get away! We truly had the largest time! We took long naps. We cooked yummy meals. We relaxed. We most importantly we got to leave our worries in Mississippi. We got to enjoy Hayden’s coos and smiles. Thank you God for my perfect little family!

The day we were leaving was beautiful minus the fact it was 46 degrees!

 Daddy love!

Okay, now mommy gets a turn:)

On February 29^th, the world celebrated Rare Disease Day. The goal was to get 7,000 members to join their Facebook group by this date. We live in a world with so much technology. We live in a world with so many cures. We also live in a world that has so many diseases that are going unnoticed. There is over 7, 000 rare disease that have no cure. They are given zero attention. A lot of these diseases do not have a name. I remember when Hayden got diagnosed. I was so frustrated. How can we be diagnosed with a disease that has no cure? ASLD does not even have a doctor that studies it in the world. I never thought that I would wish CANCER on my child, but in this case I would have. ATLEAST you can fight for your health. ATLEAST you can go to any hospital in the world and find a doctor that specializes in cancer or cardiology. As Brent and I listened to the radiothon, I cried a lot. I was thankful that Hayden didn’t have to undergo all of the surgeries that so many of these children were going through. I was also angry. I was also frustrated. I was extremely mad. These cancer stories and heart stories were so awesome. These children were given hope and able to receive a miracle. They were able to play sports again. Then my story would play, we have nothing to say other than live life to its fullest. Hayden is given no cure, no hopes for improvements, no specialist all because of the word RARE. Rare disease day is our only step of hope. We are not blessed with the ability to have surgeries or treatments to help us receive our miracle. I must say THANK YOU TO AN AWESOME COMMUNITY. Rare disease day was definitely in full force in the Mississippi Delta. I was truly overwhelmed by the amount of pictures that were placed on my Facebook wall in honor of Hayden. Schools were wearing jeans. Teachers were wearing jeans. Business offices were wearing jeans. Babies that were Hayden’s age were wearing jeans. Many people went over and beyond. Not only did they get to wear jeans, they were also told why they were wearing them. They were raising awareness for all of the rare diseases that are going unnoticed. They were making signs of encouragement for Hayden. They were giving us hope. We hope and pray that rare disease day gets larger and larger each year. We hope that one day a child will not have to suffer without fighting. It is a terrible feeling to sit back and do NOTHING. We were told that our child is terminal. We have NOTHING to do to help improve our situation. Now do you understand why I said I would have wished cancer on him? Please do not get me wrong, I would have been devastated in hearing that our child had cancer or a heart issue also. The point being is I wish we could undergo a surgery, a treatment, or see a specialist doctor. All of these things would make me feel like I did all that I possibly could have to help Hayden.  At least then we could have had hope and a chance. As Brent and I listened to true miracle stories of cancer and cardiology, we looked at each other and said How lucky those parents and children are! Rare disease day was amazing all over the USA. The Global Genes project and funds is even putting together a book to send to congress and the President. I have HOPE that all of those “I have hope in my Genes” photos will touch many lives. I have HOPE that we will continue to raise awareness for these rare diseases. One day at a time, I hope each of the 7,000 diseases receive awareness. I hope that each of these receive a cure. I hope that each of these receive research in the future. I can say one thing for sure; THE MISSISSIPPI DELTA has hope for raising awareness. Each person that participated in raising awareness for rare diseases has a special spot in our family’s heart. I was overwhelmed by the abundance of love that our community showed.  I would be willing to bet that we were participating more than most people in the UNITED STATES. Below is some of the MANY photos that gave our family Hope!

  Even dogs support Hayden!

 Anna in Kentucky supports Hayden and Rare!

 Arkansas families support Hayden!

 Jackson families support Hayden!

 Close friends support Hayden!

 Memphis supports Hayden!

 Children wear Jeans for Genes!

 More children support Hayden, from Arkansas!

 Belzoni, Ms supports Hayden!

 Starkville, Ms Supports Hayden!

 Rolling Fork and SIA support Hayden!

 Colorodo supports Hayden!

 Suzi Paige supports Hayden! They also sent proceeds from people who bought jeans to Blair Batson in Hayden's honor! Thank you!

 Cleveland, MS supports Hayden!

 Alabama supports Hayden!

 MSU supports Hayden!

 Mitzi supports Hayden!

 Mc Supports Hayden!

 Cousins support Hayden!

 Sunflower County Libraries support Hayden!

 Arkansas supports Hayden!

Double support for Hayden, Jeans, Batson car tag, and a little bit of Love!

 ChiChi loves his jeans everyday but wore them for his BAYBEE today.

 Armstrong Elementary supports Hayden!

 A Rare Gene day program for Hayden at my old school. Armstrong Elementary supports Hayden!

 Lilo's date with close friends to show Hayden love and kick off his birthday celebration.

Oh mommy, no pictures please!

 Baylor in Tenn. supports Hayden

 Alabama and high school friends support Hayden.

Brown's Pharmacy Supports Hayden! (These girls and David are amazing) They make my life so much easier. They are the reason giving Hayden medication is not stressful. Anyone that needs a pharmacist family that cares should try Brown's Pharmacy. Thank you girls!

 Spoiled Rotten supports Hayden and gives you ten dollars off your purchase for supporting him!

Indianola supports Batson.

 Great friends support Hayden.

 Mommy and Daddy support Hayden!

 Nana and Papa support Hayden and buy him beach clothes:)

 Louisiana ( I believe) pipeline supports Hayden!

 Hayden's Great Grandparents support Hayden.

These are just a FEW of many photos that were sent to our family on Rare Disease Day. I had a lot of pictures sent to my cellphone throughout the day. Seven states are shown above participating in Rare Gene Day in Honor of our Child. 2 local clothing stores are shown giving incentives in honor of our child. Children Hayden's age are wearing jeans in honor of our child. Schools are having programs in honor of our child. People are making encouraging posters in honor of our child. All of these things give us HOPE, COURAGE, and STRength. I am often asked how are you so strong? With a community and friends like each of you, I have nothing but HOPE! We are encouraged by cards and messages daily. We are completely BLESSED with the best community to love Hayden. Thank you so much to everyone who supported Rare Disease Day in Honor of Hayden.