Perspective

Today marks one year of seizures (just about everyday) for Ethan.

I will never forget that day. I was sitting in our bedroom working on the computer when I heard my husbands voice from downstairs, "Go get your mom!" he said to our 5 year old daughter. I immediately knew something was very wrong and jumped up just in time to meet my daughter at the top of the stairs. "Dad needs you!"she said. The next few moments seem like something of a blur. I ran downstairs and found my husband had been giving Ethan a bath when he had a grand mal seizure. Ethan was now laying on a towel beside the tub seizing and my husband was bent over him. We waited for the seizure to subside and then took him up to the hospital. The next day he had several more seizures and wound up being life flighted to a larger hospital. This was only the beginning of many more seizures to come.

Walking through those early days of epilepsy were scary, and uncertain. The doctors put him on medication at the hospital and told us to take him home. "Oh and call if you need anything," they said. No one could tell us if the medication would stop his seizures. He continued to have grand mal seizures and then developed drop seizures, absent seizures, and myoclonic seizures.

Looking back I remember feeling lost. Every step that my child took made me nervous. When he fell his head would hit the ground SO fast and with SO much force. There was never any warning. I was living in a constant state of panic. There was no training from anyone. I heard the word epilepsy and that was all they said. I felt so helpless. What do I do when he stops breathing? How do I keep him safe from falling? There is SO much medication to be given three times a day how do I remember all of that? He is not sleeping and neither am I, how do we do life now?

The days went on and seizures got worse. The only way I was learning anything about epilepsy was to do my own research. I scoured the internet, in search of anything that I could find. Most of what I learned was trial and error. We started a seizure log, a medication log, and food log. Praise the Lord for the people who started the doose syndrome website. We have learned so much from all of you!

Here is a video of our journey last year.

One of the most common phrases we have heard from people in the last year is, "How are you doing it?" First off I would like to say, "we aren't." By the grace and power of the Holy Spirit we are able to make one step at a time. Everyday we wake up in the morning and ask the Lord for the strength to make it through that day. He is faithful. Each day has it's own challenges. It's all in how you choose to see things. I choose to see Ethan as a blessing in our life. I choose to see these days as a learning opportunity. I choose to teach my other children that Ethan is a gift to us. I choose to believe that every child and every life has a purpose.

Currently we are seeing about 15 -20 drop seizures a day. We have not seen a grand mal in quite some time. His grand mal seizures have kind of changed. He will now have 5 or more myoclonic seizures in a row and will go stiff as if he is starting a grand mal seizure, but then he will just sit up and come out of it.
I think that this is progress!

As I look back over the year it can easily feel overwhelming. But it is all in the perspective at which I choose to look at things. A friend once said to me, "We all want a testimony but without the test." I choose to believe that Ethan is going to get better, and that one day there will be a cure for epilepsy. For right now I choose to see God's hand on our lives. He is leading, guiding and directing. I wouldn't have it any other way.

Lice, & Seizures

We have been busy at our house...

A little to busy.

At my last update we had just increased medications with Ethan. It has been really hard to get rid of these slight drops. He was having maybe 10 - 15 drops a day. The Keto team suggested that we increase his depakote again. Increasing any drug is always a hard thing for me to do. Sometimes it will work in the long run but other times it only makes his seizures much harder. This time it made them harder. Two weeks into the higher dose he has dropping so hard that he was smashing his face again. I have never really seen this drug decrease his seizures. The doctor staff thinks that we are just not at the right dosage yet. They are hoping things will get better with each increase. We have been playing with this particular drug for nine months now! 

So this last week I went with my gut and did something that went against everything the doctors have been telling me. I started to wean the depakote without their permission. (eek!) I was so scared at first but also SO incredibly tired of watching him hurt himself. He has one cut on his forehead that seems to never heal. It gets cracked open again before it has a chance to get better. I figured that if the depakote is making him worse with each increase, why not start to wean it and see if he gets better? Makes sense to me. So we did, and guess what... we have had what I want to say are some seizure free days!! He has had 2 drops (or so we have seen) in the last week and one grand mal. That is so awesome! I know the dangers of weaning a drug means increased seizures...but we aren't seeing any. Praise the Lord!

We have an appointment with the Keto team in Seattle tomorrow and I am going to have to confess what I did. :( I am not sure how they are going to take the news but I am so happy that his little brain is getting a break.

In other news Isabelle brought home lice from school. UGH! It spread to Ethan before I realized that Isabelle had it. :( So we had to treat everyone. But how do you kill lice on a keto kid? Well you use mayo. Yes, mayo. The kids had some time off of school called, "mid winter break" this last weak. So we spent one entire day putting mayo in everyone's hair and then walking around with shower caps for the remainder of the day. It was gross! Have you ever smelled mayo for 6 hours straight? Or had it run down your face and neck? So not fun. Oh and we also got some great "awkward family photos." The mayo only kills the live lice. So after a couple of shampoos to get the mayo out we then began the process of endless combing. We are still combing and combing five days later. The positive in all of this is that Ethan was having some good days so we didn't have a lot of seizures on top of the lice.

Whew! It has a been a long three weeks. 

Thanks for your prayers! 

Tomorrow as we meet with the Keto staff we could use prayer for:

Wisdom in decision making

A better eating plan for Ethan

Complete seizure freedom

A lice free home

Hope

Today was full of "hopeful" moments.

I am learning to enjoy each moment.

Every moment is a gift.

All of these smiles are priceless.

We had a blessed day

Ethan was smiling for most of it

Only a handful of the drop seizures knocked him to ground today

The others didn't seem to phase him

We are hopeful.