Our ASLD Angel

Thursday, February 23, 2012

ROLLERCOASTER CONTINUES

Brent and I cannot begin to thank each person that supports Hayden. We are so loved by people all over the United States. We have some friends that are literally more like “Aunts and Uncles” to Hayden. They are the ones that check on me often, bring dinner to our home, or just send us uplifting cards. Hayden is blessed to have some of the best adopted “Aunts and Uncles” in the world! Thanks to each of you for loving and supporting Hayden like your own!

Hayden has some little ones that support him in the children type ways! He loves his friends!

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.

Hearts for Hayden at WS!

Ashleigh and Gary's Sunday School class showered Hayden with Cards.

Lela supporting Hayden by wearing Red in his honor!

Will and Meg showing off their hearts for Hayden.

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.

Happy days are good days. Good days bring tears of Joy. We are so THANKFUL for good days!

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 29^TH. 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.

Wednesday, February 15, 2012

CURIOUS FOR ANSWERS!

I guess I am just a hard headed person. I’ve always had goals for my family. I’ve had goals of success, fun, trips, and dreams for my family. Watching Hayden struggle was not part of my plan. It often makes me angry to have to add this to my “plan.” I am constantly reminding myself that God developed this plan for a reason. We must continue to go along with plan even when we do not understand why. The Lord has an incredible plan for Hayden’s life, and we are honored to be his parents. God must really trust us! I am constantly telling Hayden that God has his hands around him. What a week! Hayden went from having great days to bad again. Why does this continue to surprise me? I will never know! I guess I have gained so much hope for good days. I have not let go of trusting in my miracle. Unfortunately, this is often a letdown. One of the hardest things that Brent and I have to do is watch Hayden suffer. Today, we have added another dose of valium. We are praying that this will keep him comfortable. I am so sick of mixing medicines, but if they will make him feel better it’s worth it! I am always so quick to place a Facebook status bragging about his good days. I never inform people of the extreme of his bad days. I guess I just try to forget about the bad. Hayden is in pain. He is hurting from muscle aches and gas build up. The double dose of valium is not phasing him. I am praying that the third dose will do the trick.

The main reason that I am posting a blog today is curiosity. I research rare diseases daily. I am always hoping that I will see a post about new research or a new cure. After all, I feel so helpless watching Hayden suffer without a cure. As far as we know, we are the only living case of adenylosuccinate lysas deficiency in the United States right now. I have only found one other mother in the USA to talk to about the deficiency. Her son passed away at eleven months. She has given me a lot of advice. I also talk to my friend in Canada. She had two daughters with ASLD that both passed away this year. Tracy and Jolene have both informed me of the seizures that would last over three hours. They also prepared me for the thirty plus seizures a day. Thank you God for these two women! I am so blessed that I have them to talk too! They did prepare me for our 3.5 hour seizure on January 15. They answer all of my questions. They pray with me and for me. They help me keep my head up. I must say that I could not have done it without their preparation. I must admit that I wish I had someone to talk to that has a child living with ASLD. Unfortunately, I do not know if there is any more living in the world. As I look at the “stats” of my blog, I see that over 5,000 people have read it. I notice that a lot of different countries have read it. We have had people from Canada, United Kingdom, Australia, Mozambique, Zimbabwe, Guam, South Korea, Netherlands, Brazil, and Costa Rica few our blog. What does this make me believe? It makes me believe that somebody in these countries are dealing with ASLD too. It makes me believe that they are struggling for answers just like us. PLEASE IF ANY OF YOU ARE READING THIS BLOG, CONTACT ME! IT IS SO HARD FEELING LIKE WE ARE ALONE. I WOULD LOVE TO KNOW HOW THESE PEOPLE FOUND OUT ABOUT OUR BLOG. IF YOU HAVE A CHILD LIVING OR WHO HAS PASSED AWAY FROM ASLD, I’D LOVE TO TALK! I’D LOVE TO ANSWER QUESTIONS AND ASK YOU QUESTIONS IN RETURN. I AM DESPERATE FOR ANSWERS, DESPERATE FOR HOPE, DESPERATE TO KNOW THAT WE ARE NOT ALONE! MY EMAIL ADDRESS IS LAUREN122885@HOTMAIL.COM.... I HOPE TO HEAR FROM YOU SOON!

Be strong and courageous, and act; do not fear nor be dismayed, for the LORD God, my God, is with you."~ 1 Chronicles 28: 20

Wednesday, February 8, 2012

A ROLLERCOASTER RIDE

The past week has been like a large rollercoaster ride. We went from having good days to bad days! It seems like there is little consistency in our life. We have had such a busy week! As I told you in our last blog, we would complete Hayden’s eight month celebration at my grandma’s on Thursday night! She is something spectacular! She cooked enough food for a week! She had two cakes, flowers, gifts for all of us, balloons! Hayden is definitely her heart!

Hayden loves his MawMaw and PawPaw so much! Not many Great-Grandparents would spoil a baby like this!

Happy 8 month celebration of life begins! Do you know many 8 month olds that get 2 cakes???

He loves his Papa and Nana so much! He has stolen their heart!!! He can't wait to eat his cake!

Hayden gets 8 month presents. They even include Pasquale's gift cards and Suzi paige gift cards! He even wrote a letter to mommy and daddy. He told us how much he loved us:) Mawmaw helped him!

Singing Happy 8 months to our sweet baby Hayden! He is spoiled we know!

He is going to love the day that he can throw a football with his mommy and dad!

He even got a lemon ice-box pie for his 8 month celebration! YUM YUM YUM!

On Friday, we headed to Jackson to complete our radiothon interview for Hayden. The radiothon is February 29, March 1, and March 2. We look forward to hearing all of the stories from our Batson friends. While in Jackson, Nana bought Hayden a lot of clothes! Hayden is so fortunate to have so many family members and friends that help dress him in beautiful clothes. Hayden is not really able to play with toys. This is a very discouraging and heartbreaking thing for Brent and I. I would love to play with him. I would love to have a toy box overflowing with toys. I have realized that he is my special gift from GOD. Hayden not being able to play with toys just means he gets to play more with me! This is a blessing! As a kid, I did not really like to play with dolls. Hayden is my little doll! We always dress him up in beautiful clothes. We love dressing him up, kissing him, photographing him and then starting all over again! His daddy prefers camo! Mommy prefers beautiful “themed and smocked”! We arrived home that night to more clothes from his Nona and Aunt Meg. Little to say, Hayden has an amazing spring wardrobe (much better than a bunch of pointless toys)!

THIS WEEKEND was BAD. He cried, cried and cried a little more. He seized and jerked all day! Monday arrives and the pain continues! We called the Doctors in desperate need of help. They added Valium to help his poor muscles! I was a little upset to add medicine 7. So far it has made a tremendous difference. He cooed, SMILED, and cried less! Thank you lord for allowing us a “normal” like day yesterday! Please continue to allow him to feel peaceful! It breaks my heart to see him in pain! Remember in my last blog, I said that I had no doubt that Hayden would smile again! I knew he would SMILE! Thank you Hayden for your beautiful smile!

Suprise Smile for Nana!

I have grown close to a sweet high school student that loves Hayden so much. She sends me the sweetest messages asking about him weekly. I love seeing that Hayden’s testimony has impacted people of all ages. She sent me a message yesterday saying she had a happy for us! It is the neatest thing! Have you ever seen the seeds of happiness??? Well it is amazing! If you want to make someone happy and smile just give them a ball of clay. On the back of the card it says the following:

“Seeds of Happiness started out as a leftover lump of clay I made into little smiles to give out to friends who were going through hard times and needed a little smile. That was in 2006, since then I have given out thousands of smiles to folks, a handful at a time, In turn, they share them and the story with their friends in need of a smile. Then those people share with more friends and keep the story going. The seeds are all over the planet by now. I receive a lot of emails with photos and stories of how these little seeds have made a difference to someone. From Africa to the land down under, the seeds have been planted and smiles have been resurrected to people who need them. Seems a lot of people need smiles these days. Share a smile- help me spread seeds of Happiness”

Thank you Faith Ellen! Hayden would love to smile for you!

We are continuing to receive such an outpouring amount of love and support! We are so blessed to have such great friends that love Hayden like their own. Last week, we heard about a fundraiser that friends are doing in our town. My initial response was that is so sweet but we are completely fine. We greatly appreciate it, but please do not worry about it! Our friends informed us that they wanted Hayden to have an emergency fund for equipment and hospital stays in the future. We gratefully accepted this amazing and wonderful offer. For a moment, I had to learn to put my pride aside and let our friends help sweet Hayden. We cannot THANK everyone enough! I can’t wait to hear who wins the raffle ticket and the winning class at WS. We will definitely have a party! We are so blessed to have a support group that cares about Hayden. Thanks to our friends and family, Hayden will have a “cushion of support” for the medical needs in our future. Hayden’s seizures are in FULL force. We are having between 10 and 20 a day! Please continue to pray for our seizure free day! We received another smile and I DO BELIEVE THAT WE WILL GET ANOTHER SEIZURE FREE DAY! IT IS IN OUR NEAR FUTURE!

“God is good all the time no matter what”

I feel so blessed that God has chosen my family to take care of such a special Earth Angel. Hayden was placed on this Earth for a reason. He is making many families remember how to pray more often, have faith, stay strong, and LOVE like there is no tomorrow! Thank you Hayden Brent for your awesome love that you are giving to each of your family members! We love you!

Thursday, February 2, 2012

Hayden had a much better week. He has stopped crying 24-7. Thank you God for allowing us sometime to breathe and enjoy him! Watching Hayden in pain is one of the most difficult things that I have ever had to do. I feel so helpless and worthless. We are so glad that he is feeling better. He is having at least ten seizures a day. We are continuing to pray for “our little bit of heaven on earth” and a day without a seizure! Throughout last week, we continued to swap medicines and alternate Motrin and Tylenol. The Motrin helped with the muscle pain caused by seizures. We are still on hold from therapies until we get the seizures under control. This is a good thing! We are getting to relax a little more than usual. A well needed break from reality. I have had a lot of time to think this week. (Not sure if that’s a good or bad thing). I miss seeing Hayden smile. I got use to the daily smiles. The smiles that I did not realize would be fading away. God granted me my birthday wish by allowing him to smile again. Maybe he will grant me another smile for Valentine’s Day. If you are a parent, you see your child smile daily. Do you really appreciate each individual smile? I pray if you do not, that you start. You never know when you could see your last smile. Do I believe that Hayden will smile again? Absolutely, I can’t wait to see Hayden smile again one day! Oh what a glorious day it will be! I am patiently waiting!

Chubby and Silly Smile!

Kermit the Frog Day Smile!

A day on the beach: You can not help but smile!

Shopping with MommY!

A smiling puppy!

Mommy asked for a smile for her birthday! She definitely got it!

Hello friends: can you stop posing? I am trying to smile at Yall! Pay attention to me not the camera!

Last week, we had a very fun week. We took pictures on Friday. Literally, he was perfect! I am sure that we got one hundred great ones. We went to Cleveland on Saturday! We purchased him a spring outfit! He picked it outJ (with the help of mommy). Brent and I went out to eat Saturday night while he bonded with his Nana and Papa! My parents loved their snuggling time! Sunday, we had visitors all day! He was worn out! We started celebrating his 8 months of life Tuesday. After all it is was a week long celebration. We went to eat with Brent’s parents at Lost Dog. We did birthday lunch yesterday with my mom. We then played outside on this beautiful spring like day! We took him to Lilo’s with some of his favorite “aunts and uncles” last night. Tonight is his real celebration! He will even get a cake. More pictures to come!

A parents DREAM come true!

Mommy loves her precious little angel!

Hayden is saying "come on daddy, make mommy stop with all these pictures!

Nana Love

Birthday Celebration 1: Lost Dog with Nona and Pawpaw!

Birthday Celebration 2: Lillos with my friend "Aunt Lauren"

"Uncle Frank and Aunt Leathe came too"

Lastly, we would like for everyone that prays for Hayden to keep it up! We are never giving up! He is our miracle and will continue to prove us wrong. I was talking to a friend today that is going through a difficult time. I told her that Doctors are not God. Doctors are there to help us but not to tell us our future! Only God can predict how well or long we will all survive. Please add to your prayers, “Hayden’s friends.” He has a few friends that need prayers just as much as he does right now. I hope that Hayden has taught people to cherish each day like it is your last.

GOD HEARS YOUR PRAYERS: THE LORD IS CLOSE TO EVERYONE WHO PRAYS TO HIM. PSALM 145:18 PRAYERS THAT YOU LEARN EARLY IN LIFE ARE LIKE SEEDS IN THE GROUND. EVERY TIME YOU PRAY, SPIRITUAL WATER HELPS YOU GROW AND DEVELOP INTO THE PERSON GOD INTENDS YOU TO BE. LET THE DAILY HABIT OF COMING TO GOD IN PRAYER BE ONE OF THE FIRST THINGS YOU LEARN. YOU WILL BE BLESSED, AND YOUR HEAVENLY FATHER WILL BE GLORIFIED.

We are definitely having a blast and enjoying each day with Hayden. Never a dull moment in the Casavechia household! Your prayers for our strength worked. Last week, I felt like I was the saddest person on Earth. This week, I am back to loving and enjoying every second with our bundle of joy!

Take a look below: Hayden has been a social butterfly since he feels better!

Hayden's neighbor Hunter! Hunter use to kick Hayden when his mommy held Hayden.

ChiChi will always take care of his Hayden!

Hayden has two "Girlfriends" They are his penny prayer team. Anytime they see money, they make everyone pray for Hayden! Their parents have truely raised them right!