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:)

Batson journey 6 cont.

Well I am definitely starting to miss my home! This air mattress is not very comfortable:( we seem to eat fast food and junk 24-7. I am so ready for home cooked veggies, fruits, and soups. Yesterday hayden had a good day. He slept a lot. He is still on tons of pain meds. He had very few seizures during the day yesterday. I was praying this meant we were seeing instant results. Unfortunately, they are starting back. I woke up to 3 nighttime seizures. They started feeding him pedialite yesterday. He is getting one ounce per ever 3 hours. The pain meds are to continue until Saturday. I must say i woke up to his eyes being open this am. I have missed his pretty eyes and baby coos so much. I am so proud of our angel. He is such a fighter. He has to be exhausted but he never complains. I feel that GOD places his hand on hayden 24-7 while at Batson. We are praying he gets a break soon. Hospitals are exhausting and we've pretty much been here since last Monday. Thank you again to all of our visitors yesterday. Hayden loves each of you.

Batson trip 6/surgery

Hey friends! Brent and I have had so many messages, calls and text messages today. We appreciate it so much! Your encouragement is what helps us! I promise you even If we can't find time to respond- its because we are busy! I am typing from an iPhone so just a quick and simple update :). Hayden went into surgery at 10. Surgery lasted two hours! What a blessing that his surgery nurse was Lindsay Nichols from Greenville. Wow a huge relief! I was so scared to hand Hayden over to a stranger. Luckily I felt confident to hand him over to her. Hayden is in a good bit of pain. He is having some "wicked" and increased seizures. We have already used the diastat. Unfortunately, they are still full force, wicked, and scary. Thank you to my friends josh, Lisa, and Whitney for helping get us through those 2 hours of surgery! Thanks to laura arnold, calvin and abby for stopping by. Thanks to my college roommate for the surprise pizza! Thanks to the oakes family for the big bunny ( using as my pillow) and donating the movies and wagon to batson :) Most importantly thanks for everyone's prayers. Hayden will have a painful few weeks. We are prepared for the fight. We are going to try to rest tonight. (air mattress style ). Mom is here to help us tomorrow. Mrs Angie will come later this week. We are incredibly blessed.

Batson journey 5: brief update

Brent and I can not begin to thank everyone for your prayers this week. We are in the hospital for swallowing struggles... Yes, I knew it was coming. Many of my friends probably remember Hayden struggling with feeds from day one. In ten months, I've tried every type of bottle and consistency for Hayden. I have tried to make feedings enjoyable and fun. Hayden loves to eat :) Hayden is on 6 seizure medicines now. These are not enjoyable. We struggle, cough, and choke two times a day.


Hayden had a suck and swallow test Monday. A small amount of aspiration occurred in the lungs during the thin barium. We will continue to feed Hayden by mouth as long as we can give him a thick consistency( pediasure, yogurt, and baby food) we have to prepare for a new "game plan" that will allow him to not aspirate his medicines.


As each of you know, Hayden has 20 to 50 seizures a day. The reason we are in the hospital is due to choking and spitting up medicines. I have hope that once we have a proper way to know that he is getting all of his medicines that his seizures might decrease. After all, if he is spitting out some medicine and aspirating some, whose to say he's really getting enough.

A few specific prayer request as we continue on this journey:
1. They will have to place an Iv in Hayden before surgery. It is a huge struggle. It usually takes an hour plus to find a vein :( please pray for a vein on the first time.

2. Please pray for strength and hope. Brent and I want to do what is best for Hayden. Unfortunately, what is best sometimes isn't what we wish for.


3. Please pray for the doctors and nurses that are involved in his case.

4. Please pray that the aspiration does not cause pneumonia and a decrease in seizures after surgery.


Lastly, it looks like Easter will be spent in the hospital. We already told the bunny his room number :) please pray for All the families that will not be home for the holiday. I will update you all briefly later in the week.I am typing on the iPhone so please ignore any typos.


We are placing Hayden's journey in Gods hands. He is Gods child. God has a glorious plan for him.

Many of you know that my favorite word is HOPE. We have so much HOPE for Hayden. In June, I had a lot of hope. I had hopes of Disney World, swimming, buying tricycles, and dirt piles in my back yard. I had hopes of Hayden having extra siblings within 2 years of his life. All of these hopes were part of our “perfect” dream world. At this point, I guess I probably took the little things in life for granted. I have always been a girl that “Dreams Big.” The word HOPE changed in my vocabulary when Hayden was 5 weeks old. I was sick of seeing him jerk with the “hiccups.” Everybody thought that I was exaggerating. Lauren, he is just fine. Sadly, I was not convinced. I decided to Google jerking babies on the internet to watch you tube videos. I immediately called everyone to tell them that I had diagnosed Hayden with a seizure disorder. What do you think I got again? Calm down Lauren. Once again, I was not convinced so we showed some friends a video. They informed us that the video we took was definitely a seizure. Off to Batson we went! Sure enough it was seizures. We were checking in the hospital. At this moment, I still had a lot of hope. I still believed that my life was perfect. The nurses helped me gain more hope. They kept informing me that seizures are so common. Often kids outgrow them within a year of life. Okay, that’s going to be us. The seizures are just a minor setback to my perfect little world.

                On day three of our visit everything was still testing normal. They said let us do an MRI of the brain to make sure everything is clear before we send you home. HMM that’s the day the word HOPE changed in our vocabulary. Hayden had bilateral white matter damage. Really, Will he ever walk? Usually not. Will he ever talk? Probably not. Will he live a normal life? Doubtful. I lost all hope. Our life was over. My brother and his girlfriend gave me a bracelet that day. It was a simple hope bracelet. It was purple and hot pink and looked like a rubber band. Every time I lost hope the bracelet would help me gain it back. I had a few people in the months of waiting on a diagnosis ask me, what is that bracelet? I would explain that it is my comfort zone. It reminded me that I can still have hope for Hayden.

                My dreams did change on July 20^th. My goals changed also. Luckily, the one thing that changed the most is the real meaning of Hope. Hope now means that I believe in Hayden. Hope means that I am appreciative of the small things in life.  Hope is a miracle. Hope is hearing the words mommy and daddy. Hope means we will play baseball one day together. I cannot guarantee that this will happen on Earth. I can guarantee that it will happen in heaven. Hope makes me realize that life is a precious gift. Hope makes me realize that I don’t have to take one day at a time. As Dr. Gillespie told me, I can take a half day at a time or even an hour at a time.  Hope also makes me cherish each smile and each coo. Hope also reminds me that you cannot take life for granted. You must live each day to its fullest. You must cherish every memory. You must give all your faith to God. You must trust in God. You must remember that God will never give you more than you can handle. I HOPE that each of my friends will remember that life is a precious gift from God. I have HOPE that Hayden will change many lives. I firmly believe that he will make people appreciate the simple things in life. I have HOPE that Hayden will impact lives around the country. Thank you, Hayden Brent for making me a better person today. Thank you, Hayden for allowing your daddy to be an awesome person too. Thank you for being our precious gift from God.  Thank you, God for trusting us with your special and uniquely made Earth Angel.  I might have “Dreamed Big” in June, but I “DREAM LARGER” now! I believe in miracles and I hope you do tooJ

·         I am looking forward to ordering some Hope 4 Hayden bracelets to give to all of our friends and family in the near future.

I have HOPE that we will ALL see Hayden walk and run!

 I have HOPE that God will give us more amazing days with this awesome blessing.

 I have HOPE that God will not allow Hayden to be in pain or suffer.

I have HOPE that Hayden is changing lives both young and old. Thank you to an amazing group of girls for thinking of Hayden. Thank you girls for giving me the idea. Sorry I had to steal it:)

 I have HOPE that I will continue to see little miracles and blessings. Look at this amazingly beautiful hand.

 I have HOPE that Hayden is supported by many.

I have HOPE that if you take the small things in life for granted that you will learn to appreciate the little blessings that we often overlook everyday. I have HOPE that many parents will raise their kids to love unconditionally like the mother of these two girls. A recent conversation with them:

Chloe what are you? My GanGan's Heart

Chloe what is AMO? My GanGan's Angel

Chloe what is Lilly? My GanGan's Sunshine

Chloe what is Mary? My GanGan's Star

Okay this is the one that gets me the most: Chloe what is Hayden? My EARTH ANGEL.

Children are never to early to learn respect, life lessons, and prayers.

This is coming from the same child that prays for Hayden everytime she sees a penny. I have HOPE that I can be half the mom that Lisa is to these girls. I have HOPE that these girls will always love Hayden (their Earth Angel) Unconditionally!

 I have HOPE that God will give me strength when I get discouraged.

 I BELIEVE IN MIRACLES. I BELIEVE THAT GOD ANSWERS PRAYERS. I PRAYED FOR A SMILE ON MY BIRTHDAY. WHAT DID GOD GIVE ME? A SMILE LOOK CLOSELY TO SEE :)

God works in mysterous ways. I HOPE that you believe the facts above.

How many of you have gone under the tunnel in Mobile? What have you done? Most everyone would say that they’ve tried to hold their breath from one end to the other. As you begin to see the light, you get extra tired! I felt like we stayed under the tunnel all week last week. I felt like we could not come up for air. Man what an exhausting week it was! The saddest part was that we were on vacation. I thought vacations were supposed to be relaxing!

 We planned to leave for Florida on Tuesday. Tuesday morning, Hayden had a dozen plus seizures. I was hoping that this would mean he would sleep the whole way there. Instead he seized every 15 minutes to an hour for the entire day. He was worn out. Hayden’s muscles were jumping. Hayden’s cry became whimpers. Our angel was clearly in pain. We finally arrived to the condo. I sent out a prayer request as Hayden needed a break.  The seizures continue throughout the night. It was time to do something. The following morning we gave him the DIASTAT. This is the emergency drug that helps stop the seizures. We only use them when a seizure goes over five minutes. The drug usually makes him sleepy. Wednesday, it did the reverse on Hayden as he continued to be in a large amount of pain. Thank goodness my mom and grandmother were there to help me! What a relief! They always seem to be around through the good and bad times. I am so thankful for them.

Finally on Thursday, he was feeling better. He was getting good naps and sleeping peacefully. The seizures were continuing. Luckily, we were down to 20 a day. This sounds like a lot but compared to 50 it’s like Heaven. Hayden went to the beach. He touched the sand. He even played in the ocean.  We were thankful for the few good minutes that we were given. Hayden decided that he was ready to ENJOY vacation! He went shopping. He went to restaurants. He hung out on the beach. He even took sunset beach pictures. He was loving life to the fullest. (I think that he got sick of the picture taking as mommy tries to capture every memory.) We truly were able to enjoy the rest of our vacation.

Hayden loves the Water!

 Styling in my sunglasses and swimsuit from Miss Holly:)

 I'm such a sweet angel:)

 Shopping with Nana at the outlet:)

                The newest problem that we ask you to pray about is swallowing. After Tuesday, Hayden struggled to take his medicine. He had to chase his medicine with milk. He was spitting some of it out as he began to choke. Bottom line it was terrible! Thursday, he had a perfect day until medicine time. He choked, coughed, and spit up. After all of this was over, he had a wicked seizure. A wicked seizure is what I call the scary and fast moving seizures. These seizures age me about 20 plus years. I truly believe the seizure occurred because of the medicine struggle. The medicine struggle continued to get worse until Sunday. He has done great since Sunday.  I think he feared going to the hospital. I had talked to our Palliative Care team / Speech Therapist and we are preparing for an evaluation. We need to be extra careful as aspiration will cause pneumonia. We discussed having surgery for a tube that could be used for medicines only. We were planning to go to Batson on Wednesday. I believe that we are going to give him one extra week to continue to improve on his own. My heart fears surgery as most people fear walking through a ring of fire. I feel that adding medical equipment to our home is just one step down. So today not only am I going to ask you to pray for Hayden’s swallowing improvement. I am going to ask you to also pray for Brent and I as we know that sometimes the right decision are the hardest to make. I pray that I gain the strength and courage to take this leap when the time comes to do surgery. I cannot tell you if it will be next week, next month, or even 5 months from now. The one thing that I can tell you is that Hayden is beginning to get weaker in taking his medicines. We are begging that our glorious God will lead us to make the decisions that will give Hayden the best quality of life.

I would also like to thank you for your prayers Tuesday. I firmly believe that prayers are the reason he gained strength by Thursday. I firmly believe that is why we were able to enjoy our vacation as a family. My mom and grandmother love Hayden unconditionally. We were so blessed to take pictures together. We sang together every night. He loves when we sing “You are My Sunshine.” Hayden took his Nana to Janie and Jack so that he could get some new clothes. Hayden placed his handprints, footprints, and a piece of his hair in the condo. We will cherish these things all summer. We enjoyed our vacation as a family! He was perfect on the ride home. He wanted to make sure that Nana and Maw maw would come back with him soon! More pictures to come soon J

YOUR LIFE SHOULD BE FILLED WITH LOVE. GOD IS LOVE. THOSE WHO LIVE IN LOVE LIVE IN GOD, AND GOD LIVES IN THEM. THIS IS HOW LOVE IS MADE PERFECT IN US.    1 JOHN 4:16-17A.

You were born with the love of God within your heart. When you live in the love of God, you will naturally live and grow in that same model. When you emulate God’s love, those around you respond to your care and thoughtfulness. When God’s love is perfected in you, the confidence you have in Christ and your Christian walk will naturally flow to others. There is nothing more important than the love you share with others.

I have a few friends that are struggling with similar battles at this moment. I hope that this daily devotion can give you a bit of encouragement and strength. I hate seeing friends struggle with similar battles. One thing that I’ve learned through this journey is that God gives special children and challenges to some extra strong women. I only have 3 ladies to talk to that have walked through the adenylosuccinate lysas deficiency life. The one thing all these women have is the POWER OF STRENGTH. The two that have already lost their children give me the encouragement to know that everything is going to be OKAY. They do not “sugar coat” anything. They are completely honestly.  For the one that is still walking my journey, she takes time out of her difficult day to check on Hayden. She answers all my questions. Wow what a relief these 3 ladies have given me.