Our new normal


Life has been a little crazy this past couple of months. Itineration is in full swing and we are traveling lots! Just about every weekend we have had the opportunity to share at various churches what we believe God has called us to do in Indonesia. 


Then out of the blue at the beginning of April our lives changed forever. Ethan had a number of seizures, and the doctors were unable to determine a cause. This is when we were first introduced to the word epilepsy. The doctors started him on medication that they said, "would help control the seizures." Little did we know at that time that this was going to be the beginning of a whole new way of life for us. 


We took Ethan home from the hospital the second week in April with medication that was to be given twice a day for his seizures. Well, as we soon found out the seizures were not just going to go away because we had started giving him medicine. Ethan continued to have clonic tonic seizures, sometimes 3 in one week. Every time he had a seizure the dose of medication was increased. (Which makes this mom very nervous.) Then Ethan started to develop new symptoms. He started having drop seizures. These proved to be very dangerous as we have hardwood floors in our entire upstairs. When we first noticed these we would see him just sort of nod off or bob his head a little. Then they became more frequent and he would actually fall down. I found that all I did all day long was follow him around in hopes that I could catch him if he were to have a drop seizure. At this point the neurologist instructed us to get him a helmet. Really??? 

This is when I started thinking..."we can't do anything about this?" As parents we felt helpless. The doctors treated us as if this was all a normal thing. I remember sitting in the neurologist's office when he wrote out a prescription for an emergency medication that we were suppose to always have on hand just in case Ethan had a seizure lasting over 5 mins. "Just insert the tube into his rectum and this will stop the seizure," He said.   Wait.. what??? I am suppose to be calm enough to time the seizure, and administer emergency medication? Come on now, there is a reason I never went into the medical field! I don't do well when someone is bleeding and needs a bandaid, now I am suppose to administer emergency medication to my child while he is having a seizure?  Oh Jesus help me through this. 


We continued to give him more and more medications (per doctors orders) in hopes that it would work, but we only saw him getting worse and worse. By the last week in May he was on two different kinds of medication and having up to 100 drop attacks or more a day. He stopped eating, and became very lethargic. This is when we took him to the Children's Hospital in Denver Colorado for a second opinion. It was at Children's Hospital that the doctors diagnosed him with "Doose Syndrome" also know as Myoclonic Astatic Epilepsy. This is a very hard form of epilepsy to treat. Often medications do not work. Click Here to see an example of what Dose syndrome looks like. This family has a story that is so similar to ours. 

Ethan has good days and bad days. Some days we see only a few seizures, other days we see hundreds. We are headed back to Denver in July to get him started on the Ketogenic Diet. It is a medical diet that helps kids with Doose Syndrome, when drugs fail to help. 


The main reason for this blog today is to ask you to pray. We are looking for 100 people who will commit to pray for our family, and Ethan for the next 60 days. We know that God is in control. It may sound discouraging at times, especially when the doctors keep giving us bad news, but we know the Healer!!! We would like to have 100 people bring this little boy before the throne everyday for the next 60 days. Will you be one to stand with us? If so Click Here and fill in your name so that we know when we have 100 people praying. We are also asking for individuals who would commit to fasting, (at least one meal) on Tuesdays for the next 60 days. God has a big plan for Ethan's life. We are so excited to see what happens!