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!
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.