Day 2 of the EEG was long. Cole's first night in the hospital he only got 4 hours of sleep. It seemed like every noise made in the hospital woke Cole up. He didn't bother pulling at the cap or anything that they had on him. The doctor came in to give us and update on the reports as of 9am the Cole had no seizures. His brain activity was registering at an 8 when children his age normally register at a 6. Cole is registering at a higher age group. That was the best news I could get that day. Since Cole had not slept well he took a 4 hour nap while my family visited. I am so thankful for the visitors we had, it made the day pass a little faster. Cole was such a trooper through this whole process. By night time Cole and I were both tired of being in the room. Because the were videoing the EEG Cole was stuck either in the crib or on my lap. He had to stay in the camera area. The wanted to make sure if he had a seizure that they knew what he was doing and could see if that was a trigger.
Day 2 night: Cole didn't go to sleep until 11pm. He was tired, bored and just wanted to run. I hoped and prayed that the doctor would come in early and we would be discharged by noon on our 3rd day. Sleep went a little better but not great. He still woke up through the night but not as much. Waking up in the middle of the night was also when Cole was done having the electrodes on his head and decided to start itching and pulling at the cap.
Day 3: I worked hard trying to get Cole to sleep in. I knew he would start attacking the cap as soon as he was up. He was up at 5:30 am since our roommate was up because he needed meds. We really had a great roommate the whole time we were in the hospital. Cole was able to sleep a little more and was up again at 7 and then back at 8:30am. By 9am in the morning I decide that Cole needed to run and actually let him out of view of the video camera. He loved that time he had. The doctor came in at 9:45 and told us that Cole was seizure free. Thank God for no seizures. She asked to follow up with Cole in a week to be able to give us all the information we would need. She said Cole has regressive autism. She explained it as the autism was the cause of his regression and losing the words he had. I was happy to finally have a diagnoses. We do have to have one more test which is an MRI in 6months. The doctor wants to rule out white matter disease. Cole did not handle having the electrodes taken off. He cried like someone was killing him. The process to get them off was not horrible. The first unplug the electrodes from the box. They then take off the cap and cup the gauze off that is wrapped around the child's head. Once that is done the start putting spraying water on the electrode area. They use some kind of stuff that looks like cement to hold the electrodes on. The water helps to loosen it up and then be able to take electrodes off. Once they were finally off I took Cole for a run in the hallway. After that I had to use a wash cloth to get the rest of the stuff off his head.
I am still processing the diagnoses of Cole. I thought I had accepted autism and was researching different things you can do with a child. Unfortunately as I laid in bed last night I realized that even though this is not the worst thing that could happen why did it have to happen to Cole. Why does Cole have to have this challenge in life? Did I do something wrong while I was pregnant? Maybe if I had breastfeed longer and not given up so easily this wouldn't be true. I look and listen to other children making their milestones and wonder how much longer it will take Cole. This is the first time sharing these feelings I know I need to get off the pity train and move on. I know that i will be on the pity train for a while but it will be an inner self fight. I plan to start looking into things that could help Cole more. Although I don't know know as much as I like about autism my goal in life will be to help Cole and ensure him that he is no different. Autism is a label and that is all it will ever be. It will not define my child.
