Well, the beginning of the month has started as an exciting and stressful time in the Kirkley household. On the 1st, we took Brody to his neurology appt and she told us that his latest EEG was normal and because it has been 2 years since his last seizure, we can start weaning him off his medicine. If there are no seizures by the end of December then he will have outgrown his epilepsy. I am stressed because I do not want to watch him have another seizure ever. I would not wish that on anyone. I am also excited and who wouldn’t be; to say that someone they love has outgrown epilepsy is something people wish and pray for once they are on this side of things. Epilepsy is hard on everyone that is close to it. As a mom, knowing there is nothing you can do while your child is having a seizure is one of the worst feelings ever. As the patient, all the appts, needle pricks, EEG’s, and medicine can be scary especially if the patient is young. As for my child, he would not understand what had happened once he woke up after the seizure and I am sure that was scary for him. I remember the day Brody was diagnosed that I asked why us; why him? I silently cried until Brody went to sleep and then I cried myself to sleep laying beside him in the hospital room. I remember waking up multiple times that night just to check on him. I remember the many times after when he started running a fever, which is how his epilepsy started, and making him sleep in the bed with me and kicking my husband out on the couch or into Brody’s bed. I remember the week we came home from the hospital and making Brody sleep in the bed with us just so I could feel if he was going to have a seizure. I remember being the mom at the park and never letting him out of my sight. I know that we have until December to know anything, I can see that we are slowly seeing a light at the end of the tunnel. I truly believe that with God anything is possible. I also know that there needs to be a greater awareness for epilepsy as so many Americans suffer from it. We are almost on the second phase of the weaning, we were at 4 pills a day and are now at 3, soon to be 2. Here is a picture of us leaving the hospital hopefully for the last time for this reason.
Well, on Wednesday the 11th Brody had a set back in his therapy. We were headed onto post where Daniel works and had just made it through the gate when Brody started having a seizure. It was unlike any we’ve seen before. I didn’t even realize it was a seizure at first. He had been asleep and all of a sudden he started blowing bubbles out of his mouth and then he started shaking but not violently shaking. I climbed into the back with him to help hold him stable while Daniel rushed us to the clinic. On this certain post though they only deal with soldiers so when we came running in we got the royal treatment with all the staff coming to our aide along with the MPs and fire fighters. This seizure lasted about 4 minutes(the longest one to date). The ambulance was called and we were taken to the ER where they kept us for a few hours to monitor him and do blood work(all which came back normal). We were released after about 3 hours. I know the doctor said that even on the medicine he could have seizures but I guess I was hoping praying that he wouldn’t have to go through them anymore. It’s so hard watching your child have one and not being able to do anything about it. Friday we had to follow up with his regular doctor on post who upped his medication dosage and wants us to follow up with some lab work on Friday before his morning dose. Continue to keep our little guy in your prayers.
As most of our family knows Brody was diagnosed with general epilepsy on Friday. It’s going to be a long hard journey as we all adapt and try to understand. Our blog will contain more updates on Brody as we begin this new scary journey together. I want to bring awareness to Epilepsy as so many people are diagnosed with this disorder everyday.