Over these last 4 1/2 years we have had to learn our way THROUGH the storm. We didn't know anyone who had been down this road before us and it was clear God was and IS using us to tell Ethan's story. I often say that God allowed me to be a reporter years ago because I would need the investigative gifts for this journey with Ethan.
Thank God for the internet. We began to study and stay on the computer trying to find solutions, other doctors, families we could talk to, chat rooms, whatever we could find to help our son Ethan. Natural remedies, the epilepsy foundations, support groups, but most of all, we STAYED on our knees to pray, praise and beseech the Lord.
Ethan would have several good days and then one bad day. We charted his seizures and when you looked at the calendar you would just want to hang your head, because there were so many days with multiple seizures. I would always write BIG on the days when he would NOT have a seizure to overshadow the bad days.
Most of the time he would have a seizure and go 3 to 4 days without one and we would pray that this would be the series that they would stop. Then the other shoe would drop and he would have a seizure and sometimes have a lot of them in one day.
At one point, he was having them so frequently, that the docs had us check into the hospital for a 4 day stay so they could watch Ethan 24 hours a day on video surveillance and could see what his seizures looked like. (Remember I said he would never have them while we were in the presence of the docs and I could not explain them that well.)
We spent 4 days in the hospital and they took Ethan off of his meds. All of them. I was kinda glad because they would be able to see what these meds were doing to him. This particular time Ethan had gained A LOT of weight and was slow and sluggish. He wanted to sleep and never wanted to play.
During the hospital stay they got what they need after Ethan had a series of major seizures in a very short span of time. FINALLY! FINALLY! The nursing team called the doctor and he came to us the very next morning.
He changed Ethan's meds immediately and said one of them was the main cause for his sluggishness and weight gain. This was in January 2006. Ethan's LAST seizure was February 12, 2006!!!!!!
I remember it like it was yesterday. He was out of school and we were on our way out the door to go shopping. Just as I opened the front door, he fell behind me. He was out of it for a while and when he came to, he said, ok mom, I want to stop having seizures. (Stab me in the heart, I felt so bad for him). I said yes, baby mommy and daddy want you to stop having them too.
Days kept going by, no seizures. More days, no seizures. When we hit a whole month, I must have emailed the whole world. Didn't you get your email? :) We could not believe it. A whole, two months, Lord, Lord, 3 months and before we knew it we would celebrate 6 months with no seizures!!!!!!!
We made it to 8 months free of seizures and Ethan continued to have MRIs every 6 months or so and we expected the October check up to be no different.
and they hit me ... smack dab between the eyes ......