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!

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!

I feel better! Thank you for your prayers!

Marley loves her Hayden!

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!

Shopping trip with Mommy!

 Acting Silly! Oh mommy loves silly smiles!

 I sure love my DADDY and MOMMY!

 A day at the beach! Oh the life, let me smile!

 Kermit the Frog fest makes me smile!

 Trick or Treat! I am a cute sweet puppy dog!

 Mommy, I hear you want a smile for your birthday! Here is your wish come true!

 Smiling for mommy's birthday! Hello can yall stop posing for the camera and look at my SMILING!

We are now patiently waiting our next SMILE!

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!

Mommy's Heart

 Looking through Daddy's heart!

 One Happy Family

 Birthday celebration 1: Lost dog with Nona and Pawpaw

OFTEN ASKED QUESTIONS:

Have you ever wondered if Hayden has tried more than one medicine to stop these seizures? Does Hayden take any medicine for his seizures? Does Hayden have a feeding tube?  Does Hayden do therapy to help with delays? All of these questions are asked weekly. Hayden is on four seizure medicines and one acid reflux medicine. He also has a fifth seizure medicine that we use in case of emergency medicine. He takes a LARGE amount of each of the medications. He takes each of his medicines two times per day. We have tried almost EVERY seizure medicine possible. I have a hard time understanding how we can have 10 to 25 seizures each day with all of this medicine. What would life be like without all of the medicines??!!?? Scary thought huh????

I have one medicine that is a sprinkle. Mommy and Daddy place it in with my baby food. I am SMART! I close my mouth tight when its medicine time! I dont like bitter medicine!

 

Usually feeding tubes are associated with sick children. I am not here to say that Hayden will never end up on a feeding tube. I am here to tell you that at this moment we are enjoying formula and baby food. I remember being in the NICU feeding Hayden for my first time out of a “bottle.” The nurse said that I must allow Hayden to consume the two ounce bottle in a maximum of thirty minutes. He just kept falling asleep, looking at me, or lightly sucking. I was so discouraged. My first time to feed him should have been a pleasant experience. Instead, I felt like a new mom that was LOST. We came home from the hospital the following day. I had sterilized all of his DR. BROWN bottles. My FAILURE feeding was soon back. He refused to eat for me. My sister in law informed me that it took her forever to find a bottle for my nephew. She went out and bought a bunch of bottles. They were all failures! Madelyn Cook came to visit. She had the solution and gave me a new bottle out of her car. Once again FAILURE! Kelli and Clayton gave us a gift basket full of necessities at the hospital. They gave us our LIFESAVER. A medicine dropper with a nipple! He took it PERFECTLY! The only problem was that it only held a half ounce. Feeding was a two man job. Brent would feed as I would prepare more milk into the medicine dropper as it got empty. The problem was that it was too COMPLICATED. 

We settled with the NUK for a while. Feeding Hayden was not much fun! I talked to a speech therapist. She actually made me feel better about the feeding tube. We were real close to scheduling his appointment. We schedule a suck and swallow test at Batson! He past it with FLYING COLORS!!! Are you serious Katy? How could this be possible? She said he needs a thick consistency. My grandma came up with the solution that now makes feeding ENJOYABLE! (well except for when he spits it back on usJ)

Haha--- this is a joke! She really DID come up with the solution! She found a baby food feeder made by munchkin. We mix baby food and formula together to gain a thick consistency. He LOVES eating! We LOVE feeding him! Thank you MAWMAW for coming up with a way to ENJOY feeding this angel! For all the new moms out there BUY ONE OF THESE! It is great for a Healthy baby to enjoy rice bottles or baby food without have bowl and mess!

Thank you MAWMAW! I am so glad to ENJOY eating! Your AWESOME!

Hayden has been doing speech, occupational, and physically therapy for the past three months. He loves the therapist. I believe the BC, JV, and Melissa love him too! We are currently placing therapy on hold. We feel that he is wearing down from seizures. Once we get the seizures under control, we will continue! No worries though, we are still practicing at home!  

Working HARD!

We stay REALLY busy! I often get confused on times, amounts, dosages etc! We are constantly swapping and changing medications! Also, all the medicines are why we have to get blood drawn often. We have to check his levels. A special thank you to our pharmacist David Brown for keeping up with all of this for us! We spend a lot of time in the pharmacy! (We highly recommend him!) Have a blessed day! We are off to decide which outfit to wear in our pictures tomorrow J

Please continue to pray for a LITTLE BIT OF HEAVEN ON EARTH FOR HAYDEN! A seizure free day feels impossible! We believe that we will prove the impossible wrong!