We were stressed with what was on our plates, with work, the amount of children we had, our callings, etc. I was not happy and looked for happiness and feeling like a person instead of just a Mom outside of the home. We were gathered in our kitchen, it had been a long day. I looked over and saw Levi passed out in Aarons' arms, his arms and legs stiff straight completely unresponsive. We called 911. The paramedics came in and whisked him away with me in the ambulance. He stayed over night for 4 nights. It was so scary and hard. I stayed by his side every second I could. Once he fell asleep, I quickly whisked to the snack bar and shoved food in my arm and hurried back to his room, so I could be there for him if he woke up. I slept in that torture chamber they call a chair/bed and held him in my arms, despite what the nurses said and wanted to keep him in that huge crib that looked like a prison.
We followed and trusted what the neurologists said and hopped right onto giving Levi anti-seizure medications to stop the seizures from repeating. Once we were released, we stayed on that routine and follow up care, adding more medications and maxing each medication and then adding more for a whole year. He was at max dose of all four medications when we wound back at the hospital facing a helmet for my child who was pretty much a vegetable. He didn't communicate, want to be held or want to be touched. The medication never did stop my sons' seizures and we decided to go a different route. We went with an herbalist and went cold turkey off all medications and slowly came back my sweet loving Levi that I missed so much! We were seizure free for 1.5 years and doing great, until he had an accident on the trampoline and fractured his wrist. The seizures were back. This time I learned my lesson that I needed a new neurologist, because the previous one just wanted to push more medication on my boy. She didn't listen to how we felt as parents, and how much Levi regressed when he was on the medication. We continued to go the our herbalist, named Harriett. She was a life saver that restored my testimony and faith that miracles do happen.
I learned that I completely hit walls and just gave up on things when I hit my 'this is too much for me to handle' mode. I completely stopped going to the Neurologist, because I didn't like my old neurologist and we weren't on any medication. I honestly thought Levi would just grow up and get better. I learned to just love Levi and accept him for who he is. Flash forward to August 2017, Aaron found a new Neurologist that had many good reviews. I was frustrated of going back down this road again. I knew what I could handle and I couldn't handle more disappointment, more Dr appts that lead to unexplained seizures. Aaron took him to all his appointments and took him to the PEMU (Pediatric Epilepsy Medical Unit) and stayed with him through the whole testing. He took him to the follow up care and got everything aligned for me to do homework at home. More tests came back with unexplained seizures, but this time we had options and this Neurologist didn't push medication on us. He listened to us and examined Levi. He did speak upfront with Aaron and told him that he will always be delayed. We took his words into consideration, but I honestly thought he would grow out of his Epilepsy.
Fast forward to him being 5, graduating Special Needs Preschool and getting ready for Kindergarten. I prayed for Heavenly Father to change Levi and bring back a "normal" child. I begged for Levi to not have these seizures and to grow out of them. I prayed many days and nights for a different life and BEGGED my Heavenly Father to him to be "fixed". A dear friend of mine just told me recently that His brain is wired with a dysfunction and he will never be "normal" . This will never go away. I will always have a special needs boy. I had to learn to accept Levi for who he is. I had then realized that Levi was sent to earth to teach me and my family a lesson. WE need to change and cater to him. He is a walking angel on earth and we need to learn from him.
We are still learning and still growing. We still do not have answers why Levi has Epilepsy, but we are trying our very best at helping Levi have the best life. We are trying our best to be great advocates for him. We have accepted Levi for who he is and his special needs. I am not begging Heavenly Father to "fix" Levi anymore. I am trying everyday to help our family and Levi have the best life we can. Our dark long road is not over yet, but it doesn't seem so dark anymore...I am starting to see a glimmer of light here and there and for that, it gives me hope!
(This was the weekend we just left town, went camping on our own and went cold turkey off all seizure meds)
We followed and trusted what the neurologists said and hopped right onto giving Levi anti-seizure medications to stop the seizures from repeating. Once we were released, we stayed on that routine and follow up care, adding more medications and maxing each medication and then adding more for a whole year. He was at max dose of all four medications when we wound back at the hospital facing a helmet for my child who was pretty much a vegetable. He didn't communicate, want to be held or want to be touched. The medication never did stop my sons' seizures and we decided to go a different route. We went with an herbalist and went cold turkey off all medications and slowly came back my sweet loving Levi that I missed so much! We were seizure free for 1.5 years and doing great, until he had an accident on the trampoline and fractured his wrist. The seizures were back. This time I learned my lesson that I needed a new neurologist, because the previous one just wanted to push more medication on my boy. She didn't listen to how we felt as parents, and how much Levi regressed when he was on the medication. We continued to go the our herbalist, named Harriett. She was a life saver that restored my testimony and faith that miracles do happen.
(Levi was at the PEMU with Aaron trying to get more answers for Levi's diagnosis)
I learned that I completely hit walls and just gave up on things when I hit my 'this is too much for me to handle' mode. I completely stopped going to the Neurologist, because I didn't like my old neurologist and we weren't on any medication. I honestly thought Levi would just grow up and get better. I learned to just love Levi and accept him for who he is. Flash forward to August 2017, Aaron found a new Neurologist that had many good reviews. I was frustrated of going back down this road again. I knew what I could handle and I couldn't handle more disappointment, more Dr appts that lead to unexplained seizures. Aaron took him to all his appointments and took him to the PEMU (Pediatric Epilepsy Medical Unit) and stayed with him through the whole testing. He took him to the follow up care and got everything aligned for me to do homework at home. More tests came back with unexplained seizures, but this time we had options and this Neurologist didn't push medication on us. He listened to us and examined Levi. He did speak upfront with Aaron and told him that he will always be delayed. We took his words into consideration, but I honestly thought he would grow out of his Epilepsy.
Fast forward to him being 5, graduating Special Needs Preschool and getting ready for Kindergarten. I prayed for Heavenly Father to change Levi and bring back a "normal" child. I begged for Levi to not have these seizures and to grow out of them. I prayed many days and nights for a different life and BEGGED my Heavenly Father to him to be "fixed". A dear friend of mine just told me recently that His brain is wired with a dysfunction and he will never be "normal" . This will never go away. I will always have a special needs boy. I had to learn to accept Levi for who he is. I had then realized that Levi was sent to earth to teach me and my family a lesson. WE need to change and cater to him. He is a walking angel on earth and we need to learn from him.
(Levi, Tanner, Mckay & I went to a Hopekids event. It was Lego land Discovery Center and Sea life Aquarium)
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