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