Just a few of the MANY that are loving and supporting Hayden! We love ALL of our friends and family that visit us weekly.
Thank you so much to everyone who participated in the benefit raffle for Hayden. We cannot begin to tell you how much it means to us to have so many people loving him. Another very special thanks to Kimberly’s mom for dealing with all of the account set up and deposits. We are so blessedJ we had a great dinner and enjoyed visiting with each of you. The lucky winner was Lisa Fratesi’s children. She wanted to give the money back to Hayden. We want to get her children something special from Hayden J Washington school also did the hearts for Hayden. I cannot wait to share a picture of them in their red shirts for Hayden day.
Hayden would like to tell you thank you for loving and supporting him. Whether it was at Deer Creek, WS, or the people that worked hard for his raffle:) More pictures coming soon from the raffle drawing once my hotmail opens back up :(
As for Hayden, we are still riding this rough rollercoaster. I am pretty sure I am developing rings below my eyes. I feel like a walking zombie. Hayden is seizing so often in his sleep. I am sleeping so lightly so I can hold his finger, pray with him and make sure he is okay. Usually these seizures are beginning around 3 am…. That makes for a LONG day! Hayden has had some very different and scary seizures recently. He is jerking faster, closing his eyes, and holding his breath. All of these things make for a very emotional rollercoaster ride. I keep reminding myself that he is a blessing. He is a miracle. He continues to surprise us. We are so blessed for each day with Hayden. The doctors added some more medicines yesterday. I feel like we add medicines each day. We are on 7 medicines in the am, one mid-day, and seven at night. I need a journal to keep up with them all. We recently had to use the distat (emergency drug to stop a seizure). Using the distat is always scary and devastating. I hate to “drug” Hayden to stop a seizure. As far as the fussiness, we have learned that he likes pediasure. The pediasure has helped him with belly aches. He seems to be a much happier baby. Praise God for a happy baby. Happiness makes all worries disappear.
My friend Holly and Mrs. Nita gave me a book. The title is Life is a Gift. I LOVE IT ALREADY! AWESOME BOOK! I began reading it last night, I got to page 17 before I was crying and rocking Hayden to sleep. It really makes me realize that I am not alone. Many people are struggling just like we are. I read a passage that hit home to me. They were sitting in the genetics office waiting room. They looked around the room to see handicap kids, kids with tubes, and helmets. The mother looked at the Husband and said why are we here? We are not supposed to be here? Our child is supposed to be healthy? Each of these sentences made me cry because it’s exactly what I did. I still feel like God is going to wake me up from this dream. I am learning that I am supposed to be the one sitting in the genetics office. I am the one that is supposed to help support others that are hurting. God placed me on this earth to be Hayden’s mother. He placed Hayden on this Earth to make a difference. Now we must stop crying and do what God placed us on this Earth to do. I am confident that God picked the correct family. I am sure of this because of our great help! Our family is helpful and awesome. Our friends are our backbone. We could not do any of this without the uplifting comments, cards, messages etc. I have learned the importance of letting people know you care. We have had many family and friends let us know this! We appreciate it! Hayden, Brent, and I are going to continue doing what God placed us on this Earth to do. We are fixing to get busy making a difference and helping people in need. Recently, Hayden had Deer Creek, Washington School, and the benefit raffle done for him. Spoiled Rotten is doing a fashion contest in honor of Hayden where all proceeds go to Blair Batson. His friend Reed is donating crayons and coloring books to Batson for his second Birthday. The ASTRA club of Greenwood is adopting a floor of Batson in Hayden’s honor. Kappa Delta is doing books and coloring books for Batson in honor of Hayden. Mrs. Roberts, Jennifer, Lisa, and Kelli are supporting Batson car tags in honor of Hayden. Jordan James and Emily Lewis are swiping their Bank plus credit cards in honor of Hayden. All of these things are HUGE. They give us courage. They give us hope. Each of these things is making a difference in someone’s life. We hope that we can continue to help children in need.
Please go to GLOBAL GENES PROJECT AND FUND ON FACEBOOK. WE ARE TRYING TO GET ONE MILLION LIKES FOR RARE DISEASE DAY ON THE 29TH. PLEASE WEAR JEANS FOR GENES ON THIS DAY IN HONOR OF ALL THE KIDS FIGHTING WITH A RARE DISEASE. WE MUST DO OUR BEST TO GET AWARENESS OUT THERE. WE WILL CONTINUE TO BELIEVE IN A CURE. WE WILL CONTINUE TO BELIEVE IN A MIRACLE. HAYDEN HAS HOPE IN HIS GENES J Thank you to Helen Story for getting Jeans for Genes approved for her school district. Thank you to Misty Morlino for working on getting it approved for the school in which I use to teach at. This day is highly important! Not only will it raise awareness but it will help people realize how lucky we are.
No comments:
Post a Comment