Noahs Epilepsy Journey

On June 3rd 2017, a day after Noah turned a year old, he began having seizures. He had 3 that led us to the doctor, thankfully his doctor ruled those 3 seizures as febrile which would go away as his fever went away. When he began feeling better, the seizures didnt stop. They actually began happening more frequently and getting worse each time it seemed. We ended up back at the doctor who referred us to a Neurologist for a EEG to determine what was causing the seizures. Sadly, we didnt make it to that appointment because August 4th he had two more seizures causing us to go to Childrens er where they monitored him, put him on medicine to help control the seizures and diagnosed him with seizure disorder. On August 9th we had our appointment with his Neurologist who scheduled a EEG and a MRI, she kept him on the medicine and he has been officially diagnosed with epilepsy at a year old. August 15th we had a EEG done and August 31st we have a MRI. We have had blood work done which was the most heartbreaking thing for me to go through, seeing my baby poked over and over was unbearable. This entire journey has changed our family, we have began learning the best we can and adapting to make sure he still enjoys his childhood. The hardest part is getting to his doctor appointments, because they are located in Childrens hospital and we dont have one near us. We have to drive 1 hour and 30 minutes, if theres no traffic,every week for Neurologist appointments,labs/blood work, mri, check ups and er visits. On top of the gas we go through we also have medicine we have to buy.. insurance wont cover it because he needs a refill every 24-26 days and they will only cover it if every 31 days which is very hard. This has been so emotionally draining on us because we cant sleep due to watching him to make sure he sleeps okay. I never would of thought we would be going through this with our baby, but we are doing the best we can. As much as we hate to say it, we do need help with the gas to get to his doctor appointments and medicine to help him not have as many seizures. Im not someone who usually post my personal business or ask for help but i dont know where else to turn right now.