Blessings

Each new day brings with it new hope. On Monday we only saw ONE seizure from Ethan. It was a wonderful day. Then on Tuesday and Wednesday we saw more average days, about ten seizures each day. This is the roller-coaster of epilepsy.

Often times I fail to update people because I feel like I don't have any new news. We may have had one good day, but we know that it doesn't mean that seizures are gone. (at least not yet.) Each day we rise in the morning, pray that God would work in a miraculous way and heal this precious child. But each day we see that his plan is just a little different then ours. Oh there is healing taking place...it is just not happening in the place that I intended for it. You see I am learning and growing...I am the one that needs the healing in so many ways. I find myself needing to see change, needing to see that miracle in Ethan's little body. But what I so often fail to see is that God is doing miracles in our family every day. We are growing and touching lives all around us in way that only He could orchestrate. 

I will never stop praying for healing. I will also continue to look for the blessings that each new day brings. Seizures are not fun. They are messy. They are scary. They are life changing. So how can I find a blessing in all of this? Well I am blessed to know the God that holds my hand through all of it. 

Joy

Uncontrollable laughter. That is what we heard from Ethan today. It has been a long time since we heard him laugh, and laugh like he did today. I want to remember this day. It was extra special.

We are down two pills of Keppra now, and we see his sweet little personality coming back. :) It makes my heart leap when we hear him laugh, or see him respond to siblings when they are talking. So many things that generally are taken for granted by most parents. He even asked to use the bathroom today!! Wow, so many answers to prayer. My mommy heart is full tonight.

On Sunday we will decrease more medication and I know that we will see increased seizure activity on Monday. This how his little body works. But in order to push through this wean, I need to remember today. He is so much more alert. It is almost as if the fog is clearing...

The Weaning...

We are on week two of the weaning process. The first week we took Ethan down one pill (Keppra) and saw little to no change in his seizures or behavior. This week we decreased another pill and saw a definite increase in seizures the first day. Today, no seizures so far.... Not sure if there hasn't been any or if we just haven't seen them. Either way I am so happy!! After the last year of countless seizures I know very well that they could come back at any moment. But I am enjoying this moment! When ever we change the slightest thing with his medication or the diet we see an increase in seizures, so I am assuming we will see them return when we take another pill away next week. However if we can push through this wean, then we only have one medication left to wean!!! I am so excited to see if the diet can work on it's own. I mean work better than the diet and medication together. As I do more research, and talk to more parents of doose kids, I am finding that there is a large number of kids that do much better off of the medication. The diet could make the seizures go away 100%. The only way to find out is to wean the meds. We are all quite tired of these nasty seizures.


Thank you all so much for your prayers!

Family Update

So much has happened in the last few months, and to be totally honest I am not the best at keeping family and friends updated so... I thought the easiest thing to do would be to post pictures of some of my favorite moments. Hold on while I flood your computer screen with photos....

Ethan turned four this summer,

and he had is first Keto cupcake.

Much fun was had at the lake this summer...

In August Isabelle turned seven!!! 

She got to have her very special birthday father daughter date.

In September we went for a hike at Deception Pass

The kids had fun hiking to the top.

I was so impressed with Ethan. 

He made it almost all the way to the top.

The guys...

Oh yes mom and dad had fun too!

Isabelle enjoying a break

Fun in the water

Isaiah chillin

First day of School 2012

She lost her first tooth.

Me and my blessings.

Each one displaying their own unique personality.

I love them.

Neurology Team Meeting

First, I would just like to say thanks! Thank you to all of those who have been praying for our family, and especially for Ethan. Today we met with Ethan's Ketogenic team. This includes the Neurologist, Dietitian, Pediatrician, and  Pediatric Nurse. It was a great meeting. We knew that the very first suggestion from the team was going to be to add another drug, and we were right. They would like to add lamotrigine, to the long list of medications that he is already taking. Don't get me wrong I am not totally opposed to medication, it's just that we have yet to see any of them work. Statistics tell us that after 3 failed medications there is an 80% chance that the next ones will fail as well. We suggested weaning him off of two of his current medications before trying any more. You see I have this prompting from the Holy Spirit that the drugs may be making the seizures worse. How do you explain that to the doctor??  Well, the Neurologist was very open to our idea of weaning Ethan's current medication before starting any new ones. Praise the Lord!!! So in the next 6 weeks we will slowly wean the medications that he has been on the longest. It will take 6 weeks because he is on such a high dose. Please keep praying for us during this time. The Neurologist says that he thinks the seizures will increase a little with the decrease in medication. I am praying that we see a decrease in seizures. In fact I am praying that we see all of them go away. I know that our God is bigger than this thing called, "Epilepsy." At the end of the 6 weeks we are going in for another appointment and then they are wanting to either add lamotrigine, or they want us to strongly consider the Vagus Nerve Stimulator. I am glad we don't have to do either one yet. Ultimately we want what is best for Ethan. We also want him to be seizure free with out making him into a zombie from all of the medication.

We are praising the Lord for a medical team that is willing to listen, give good advice, and ultimately leave the decision up to us. We definitely need wisdom in how to proceed. We have some tough decisions ahead, and we could have a very interesting 6 weeks ahead.

God is faithful. He has sustained us thus far, and I know that he will continue to lead us.

Thanks again for your prayers. We can feel them!