Escaping worries and discovering happiness

Well we are finally Mississippi bound:) Hayden has officially been to the beach 9 times in one year. Many people probably think, why do they keep taking him to Florida? Well the reason is he Loves it! I'm not sure if it's the wind or the fact the 12th floor is so high that he feels close to the angels. :) We are firm believers in continuing to live our life to the fullest! We don't want to look back at this precious life and have regrets. Hayden is a memory maker. Florida is our escape from worries. Florida is our 2nd home. Florida has given Hayden many memories and pain free days. My little beach bum loves Florida! We started his birthday week out by a mini trip with his nana, papa, and uncle. Usually, we are sad to leave Florida. This time we are excited! Guess why? We are so close to having a prayer answered. We are so close to being one! I have prayed, pleaded, and begged God for this day. I have cried many tears of questioning if God would answer this prayer. We have had 3 scares where I feared we would not celebrate with Hayden on JUne 1. God is so close to answering our prayer. All I can do is say Thank you God! This whole week has been emotional as we are so happy and sad. We don't know what our future holds. We do know that God answers prayers. Hayden is still with us. He has experienced more in 12 months than many kids do in a lifetime! Hayden is our memory maker, smiles, energy, hope, miracle, and more importantly Our Earth Angel. Thank you God for this unbelievable journey. Thank you for trusting us with your child. Happy birthday Hayden brent! Let's get to party planning:)

Happy Mothers Day

Mothers Day is always a special day. I have always (since K-4) loved making special things for my mom and grandmom for Mothers Day. I get very excited about celebrating special occasions. Last Mother's Day was even better. I received roses from Brent from our Baby to Be. I could not wait to be the mother to a healthy wild active little boy! This Mother's Day was different from them all. I was FINALLY a MOM! I have been so excited about this day until it arrived. Hayden woke up early. He was in a good mood. He made me so HAPPY. We were also going to dedicate him in the church. I was such a nervous wreck full of emotions and saddness. Mother's Day had a new meaning for me. A meaning that was a very sad one. I now know the true meaning of being a MOM. I LOVE BEING A MOM. I LOVE MY CHILD. I can not imagine a Mother's Day without Hayden. I was an emotional nut case as HOPE gained a new meaning. I HOPE, PRAY, and BEG that I will get to celebrate MOTHERS DAY again with Hayden next year. I have gained so many new friends this year. The main thing my new friends and I have in common is ill children. A few of these Mothers have recently lost their children. I quickly thought of them, how empty their hearts must be on this special day? My heart was aching for these Mothers. My husband quickly reminded me that ....Tomorrow is not promised for Hayden. Tomorrow is also not promised for any of us. I finally got off of my pitty party of saddness. I ended up having the BEST MOTHERS DAY. Our child was dedicated under the same roof that Brent and I got married. He was dedicated by the same preacher that married Brent and I. We are so thankful for the small moments in life. We are so thankful for the PERFECT Mothers Day. I LOVE my Ronaldo birthstone and pearl bracelet from Hayden.  I am so happy that God chose me to take care of one of his special angels. I pray that my friends and others that are longing to be a mother get to experience this wonderful journey soon. I pray that more of my friends and family will adopt kids longing for a special home. I love being a MOM and I HOPE you do too!

For those of you who do not know me. I was a first grade teacher. I love ART! I believe in MEMORIES. I helped Hayden make my cards. They turned out perfect! I am so thankful for my cards.

 "for I know the plans I have for you, declares the lord, "plans to prosper you and not harm you, plans to give you hope and a future" Jeremiah 29:11

The cross is our representation of his baby dedication on Mother's Day. The best gift and a dream come too!

 Hayden had a cake to celebrate dedication. We are so proud of our angel! He was posing with one of the most important ladies in the world. My Mommy! Without mom, I would not have Hayden. I thank God for you Mom!

 Without Nona, we would not have Hayden. We are so thankful for you. Without Meg, we would not have ChiChi. ChiChi is the one that can talk for Hayden. I love to watch his milestones. I wish that Hayden could talk to his Chi. Chi has been saying Lollie and B for months. His new word of the week is Hay Hay. I thank God for our precious nephew.

All we are missing is MawMaw Mrytle. Hayden with his favorites. (Until Fathers Day:))

 Hayden with his yummy cake for baby dedication.

 We enjoyed a weekend full of great memories together. I love this precious angel from heaven.

 Look, who was so Happy to wake up on Mother's Day! He was ready to shower his mommy with LOVE!

I can not wait for Brent to experience Father's Day next month! We will make it extra special just as he made Mother's Day!

11 Months:)

I decided that it was time to update my blog this morning. I figured that I had the right to "brag" for a moment. Well then I realized that I better not "brag" as Hayden had two seizures in the time I was starting my computer up. Let's just put it this way, Hayden turned 11 months on May 1. God has truely blessed us with some great days in May. (Beats April so far). We have finally gained some energy. We are finally back in the swing of things. We were so excited for Hayden's 11 Month Birthday celebration. Many times in our life, we did not feel that we would even see this day. He is our miracle child. We are so close to the one year birthday. I am so anxious, nervous, and proud. I want him to feel good on his day. I hope he is seizure free on his day. I cant wait to make it special for him. Praying that God gets us safely to June 1st.

Month 10 was rough. We spent three weeks in the hospital. Within these three weeks, we were told devastating news. We were heart broken. We felt as if our lives were over again. HMMM, so what should we do now? Go home and cry? Yes, this was my first reaction. Then we decided NAH, we must continue to live life to its fullest. Hayden does not want us to give up! Hayden has lots of things to do in his precious life. So we loaded up and went on vacation. Hayden deserved this! 

We sang Happy Birthday to Hayden on our way to the Beach. He took his two friends with him. They would pamper him all week. He had a great week. It started out very scary though. We continued to pray for better days. Guess what? God gave us better days. We were able to take him to the beach. His Nona gave him a UV tent for the beach. He loved it! He cut his first tooth! Huge accomplishment:) He went to the track and went on a train ride. He went to crab island. He went swimming in the pool. HE WENT 26 HOURS SEIZURE FREE! All in all we had a great week with our perfect little family and friends. Hayden has officially done more in 11 months than some 10 year olds do in a lifetime.


I love this picture of him sleeping. It shows how relaxed the beach makes him. I believe he could be a beach bum. I am sure his mommy and Nana wouldnt mind it.

 Well Hayden has been to Orange Beach 2 times and Destin 6. He loves going to Nanas home away from home. It is perfect for Hayden. He loves to relax. This time he decided to feel the ocean water. He said OOOHH, Mommy that feels good!

 Daddy and Hayden took a dip in the swimming pool. Hayden was so excited for soming daddy/son time.

 Crab Island? I think so! He wanted to go play in the prettiest water in Florida. So that is just what we did! He loved his boat ride! ( Notice his crab outfit for a day at crab island)

 He was so excited to finally have that big life jacket off! He was ready for a nap:)

 Okay, mommy had to change him. Hayden is quickly growing out of his 12 month outfits so we are trying to get a couple of outfits in a day. Yes, he is definitely a fashion King. He even got new sunshades:) ( I have had so many people

 We love these girls like daughters. Hayden loves these girls like sisters! Thankful for their kisses and smiles.

 Beach Bum, I think so! He loved snoozing in his beach tent.
                                    
 Hayden did not feel good in this picture. The only problem with good days is that you can never forget about the bad. I can never stop thinking about the future. It is a terrible feeling. So as I looked at him, I figured he needed a little love. So I drew Hayden a picture on my menu. I LOVE THIS BOY SO MUCH!

 Hayden enjoyed his train ride. He was so excited to be outside in the warm yet breezy weather.

Love and happiness

Well here is another short and sweet update:) We are GREAT! We are BLESSED! Hayden has had 5 GOOD days After 3 weeks in the hospital. God is blessing our family in ways I never imagined. We have almost had a year with HAyden. We can't wait to celebrate! This milestone is huge! The Sweetery in CLeveland called today. They will be doing his dream cake from the icing smiles organization. We can't wait to see his surprise dream cake! We can't wait to celebrate. We are so thrilled! Hayden has a follow up Monday. I will let you all know. Hayden is still seizing. Luckily, they are minimal, short, and soft. Today we had less than 5:) This is a huge accomplishment. We are so thankful for the g tube. He is able to take his meds while sleeping without choking. Even our friends can feed him! It's such an easy task! Please continue to pray for peace, comfort, and good days! Our LOrd is faithful! He is taking good care of our family. Our friends And family are amazing.

A quick scare

Hayden is home after Tuesday's scare. We are so blessed with our angel. He is such a fighter. We found out that the breathing issues came on due to an unresponsive seizure. These unresponsive seizures are so frightening because he looks lifeless. Haydens oxygen was in the 70s when we got to drmc. We were blessed with great people to get us to JAckson. First time to ride in the children's ambulance. They were awesome. We have added a medicine. This makes medicine 8:( he is still seizing. Please continue to pray for peace and zero pain for our angel. I will update more later. Thanks to the visitors, balloons, and snack packs:) they brightened our day. Luckily, I have an angel here at my home. I would much rather spend time with him than blog.

10 Month Birthday/ Hospital Journey!

Well Everyone knows how I feel about celebrating each month of life. Hayden had a blast at his ten month birthday party! We had the best time! Some months end up being a little more spectacular than others. The ten month birthday party was as large as his year one will be. I was quickly reminded of why it was so spectacular. 1. We have an amazing group of friends. I mean we have friends that love us more like family. 2. Jesus was reminding us yet again why we celebrate each month. We had a great time on April 1st. Hayden's ten month birthday party was more about all of his friends. Hayden and I spent a lot of time preparing to make it perfect. We made his friends Easter Baskets. We bought food. We cleaned the home. We prepared a birthday wreath. He sat outside while I fixed the flower bed. Hayden will definitely have yearly Easter hunts for his friends! Basically just a lot of bonding....

This is Hayden's First Birthday Wreath that we made into an Easter Wreath for his ten month party:)

 Each child was given a pair of bunny ears to wear while hunting eggs or playing in the jumper.

 We moved it to the side porch area. It was so beautiful outside! The buckets had lots of fun happies for the kids to take home as party favors.

 Hayden even had the Easter Bunny arrive. The kids were THRILLED to meet the bunny. (well most of them).

 Ashley Frazier always makes the cutest cakes for HAYDENS parties:)

 We even had our picture that Beth Giachelli took out on the table for decoration. We are so blessed to have a good photographer as a friend.

 Well I am pretty sure Lisa and Helen are talking about me in this picture. I made a LARGE mistake. You should NEVER put chocolate candy in Easter Eggs when its 85 degrees outside. Melted Chocolate = Mess on Smocked Dresses :/ I will use skittles next year!

 Hayden really enjoyed the spring like weather on his 10 month celebration of life party! He loved how soft the bunny was too!

 Paislee and Chloe were NOT afraid of the Easter Bunny! They got some large Brownie Points:) After all with mommies like Kim and Lisa, they know how to get their way:) Just tell the bunny exactly what you want, give lots of hugs and kisses!

 Hayden was getting sleepy. He had a blast at his party!
 He found his great MawMaw. He asked her to take him inside. He had enough of the party. He was worn out and had a LONG TWO WEEKS TO PREPARE FOR!

We are so blessed for each month that God gives us Hayden. We have learned to appreciate the small things in life. I get so disgusted when I hear people making plans for years in advance. We must all live our life one day at a time. We must all live each day as if its our last. God is the only one that knows our plan. We are so blessed for each month that God allows us to enjoy Hayden here on Earth. So many of our friends and family have learned such a valuable lesson about the importance of love through Hayden. The ones that havent are truely missing out. We love our angel. We are blessed to have our angel. We look FORWARD and THANK GOD for each individual month not year.

Well the next morning is finally here. We are heading to Jackson, Mississippi. We are heading to Blair E. Batson again. We were told to pack a bag just incase. Yes, this was the indications that we hated to hear. We love Batson. WE love the people at Batson. We just hate that we have to see them in the hospital. We ended up spending 10 days in the hospital. I briefly updated everyone as we were there.

Monday: We met with our palliative care team. We had some concerns about increased seizure activity. We believe that he is choking on all of his medicines. We fear that this is the main reason for the increased seizure activity. Everytime I give him medicine, he is choking and coughing half of it out. We prepared for a Suck and Swallow Test and an Upper GI. We were admitted into the hospital. Our sweet friend Katy Vaughn began the suck/swallow test. Hayden was aspirating. I was devastated. My angel is getting medicine in his lungs. My angel is setting his sweet body up for pneumonia. (Yes, I already KNEW that these were going to be the results. Hearing them is another story) We had to make the decsion of the NG or G Tube. The thought of surgey was so terrifying. Thank you Savannah Reis for dinner and gifts.

He is telling me "Thumbs Up" It will all be OKAY MOMMY:)

Tuesday: We met with our neurologist. He believed that we needed to check medicine levels. The medicine levels were low. This was an indication that Hayden was not getting all of his medicines. He was highly concerned with the amount of medicines that were missing his sweet little belly. He recomended doing the G Tube. We then met with our Palliative care team. They helped me realize that it would be okay to have a feeding tube. The feeding tube would become part of our everyday life. The surgeons nurse came around and informed us that we would be getting a MicKey. She also recommended having the nissen surgery to help with the spitting up. Thank you Emily for dinner.

Wednesday: Mom was back ofcourse. She cant stay away from her grandchild. We had nothing much to do on Wednesday. Brent and I decided to go to Shapleys. Well guess what they decided to do another EEG while we were gone. DonDon got to take Hayden on a field trip. Sadly the EEG is still showing tremendous amounts of seizure activitiy.They had to place an IV in Hayden also. They used an ultrasound machine. They were able to stick him on the first try! Heaven on Earth for sure!

Thursday: We found out surgery was not going to be until Monday. They were going to let us discharge for Easter. We were so happy! We didnt get to go home until A&A sent us our new suction machine etc. While we were waiting we met the Governor. Hayden was excited!

Friday: Hayden was HOME! Thank GOODNESS! His Mommy and Aunt Whitney took him to see the Easter Bunny.

Sunday: We enjoyed Easter. We enjoyed church. Sadly, then it was time to head back to our second home. We were definitely fearing the surgery on Monday. I fed him his medicines for the last time. He choked and spit 75 percent of the up. I was devastated. They were going to cut my angels belly tomorrow. I cant imagine of his sweet belly not looking the same.

Monday: We woke up and prepared for one of the most challenging days of our life. Once again, we have some awesome friends that treat Brent and I BOTH like family. They love not only Hayden but BOTH of US! THANK you to not only our parents but our few friends that NEVER left our side as HAYDEN was in surgery. They definitely made the TIME go by faster! I was so scared of leaving Hayden. Luckily, the nurse was one of Brents highschool friends so I felt much better about leaving him. Monday afternoon was terrible. He had tremendous amounts of seizures. He was sore. We had to use two emergency diastats. They did not even stop the seizures. He had a WICKED seizure where his eyes turned blue. Thank you GOD for holding onto Hayden through this rough day.

Tuesday: Hayden decided to sleep all day. He had minimum seizures. We had a lot of visitors. We were so blessed with less seizures. We were able to begin chimney feeds. Yes, I feel like I should become a nurse.

Wednesday: Hayden knew he had a lot of visitors coming to see him. He was so excited that he decided to wake up. He stayed up all day. He had a good bit of seizures on Wednesday. Thankfully, they were all very light and quick. This is a true blessing. Hayden also had a visitor from wrestler Ted Dibase. He even prayed with our angel.

Thursday: 4:30 A.M. our alarm started going off, followed by a large amount of nurses. Hayden's oxygen dropped to 78 percent. What a scare to hear the nurse say he's blue! We were devastated. After a rough few hours, Hayden had an amazing rest of the day. He slept all day. He met Eli Manning. How many 10 month olds can say this? Eli signed his shirt and hat. Ofcourse Hayden is always dressed for the occasion so he wore an Ole Miss jersey. Eli liked this! Hayden had another very special visitor. When Hayden began having seizures, I was informed to contact Emmy Burton. Her child Shelton was a perfectly healthy boy that had battled seizures from day one. Well she was so nice to give me all the information that I asked for. Most importantly she gave me HOPE. When Hayden was rushed by ambulance on January 15th, Emmy was quick to message me. She informed me that she was there if we needed anything. How can a stranger be so kind? On January 18th, Hayden was able to go home from the hospital. I was so EXCITED, BLESSED, and HAPPY. Until we were coming through Belzoni, I got a message to pray for their family because Shelton had passed away. I cried and cried. How could God take this sweet angel away from his parents? I was so scared to even take Hayden home that night. Seizures are so scary and wicked. I found my comfort in knowing sweet Shelton would never have another seizure in Heaven. When Hayden's hospital door opened to her as a visitor I lost it. How can she be so strong? Where is she getting this type of strength? She lost her child to wicked seizures less than 3 months ago and she still has the courage to help me! She is a true angel. She gave me the most amazing devotional JESUS CALLING. She also gave Hayden one of Sheltons favorite books. Hayden will read it often in Sheltons honor. Once again, I was reminded that I have a calling. I have a calling to not only take care of Hayden but to support other families going through the same thing. Mothers love their children like nobody else. Therefore mothers can relate to each others fears and heartaches. She was definitely the best visitor of the entire week!

Friday: Hayden met American Idol finalist Jasmine Murray. She was awesome. We will definitely cheer for her in Miss Mississippi. Hayden ripped his IV out of his hand. I told the nurse that was Hayden's indication that he was ready to go home. Guess what? We GOT TO GO HOME! As we were preparing to go home Beth and Mary Elizabeth came to visit. They gave Hayden a sweet gift. They also gave me a bracelet that said STRENGTH. I believe I have forgotten what strength was. I will wear this bracelet on rough days so that I do not loose HOPE.

We are now home with a lot of responsibilty. We have lots of medical equipment. We have lots of changes to make. We are ready to make these changes if it means Hayden will feel better. Hayden was in a good bit of pain throughout the weekend. He was hurting. Today has been much better. We have seen a slight decrease in seizures. We have also not had to choke him to medicate him. I now know that he is receiving all of his medicines! What a blessing! Lastly, I can not begin to thank everyone for your visits. Thank you to the Smylyes, Clements, Dills, Ybarra's, Mary Claire and Sarah for keeping us full. Thank you to EVERYONE else that brought Hayden happies and food. WE CAN NOT TELL EVERYONE HOW MUCH WE APPRECIATE IT! Please keep Hayden in your prayers as the recovery process is still far from over. Please continue to ask our God to allow Hayden a peaceful life without suffering. We love our angel. We pray that God continues to work through Hayden to show us examples of Miracles on Earth. Thank you God for allowing him to recover so quickly from surgery.

Roller coaster ride....

Man oh man! Can we say a roller coaster? Yes, that describes the past 24 hours. Hayden had a great and full day yesterday. He was awake all day! He even cooed for his daddy:) thank you lord for these simple blessings. Hayden had lots of visitors. He was off of pain meds for 12 hours. Unfortunately, he still had a good bit of seizures. They seemed to be less intense and shorter. This is a good thing! Then the roller coaster gets rough...... Hayden began to whimper at 9pm last night. We began pain meds. He was sleeping perfect until the monitor started going off at 430 am. Hmmmm let's silence it and go back to sleep.... Not so much this time. Hayden's oxygen was dropping. They called in a doctor to listen to him. They recently ordered an X-ray for Hayden. Luckily it was clear. Praise God! I guess he just wanted mommy and daddy to wake up at four! Hayden needs to get well. These obstacles are Tiring. Hayden needs a break. Please pray that Haydens oxygen stays in the upper 90s. Thank you for all your love and support:) yesterday, he had a professional wrestler come visit. The man even prayed for him. He also had grandparents, aunts, and friends visit yesterday. We had an amazing lunch from the smyley family. I now have a new favorite restaurant. Melanie NEw brought him tons of goodies from the march of times. He received teddy bears, balloons, and most importantly lots of kisses:) we enjoyed all of your visits:)