Church

A church home is an important thing.

Moving to the Pacific Northwest sent us on a mission to find a new church home. Seems like a pretty straight forward thing right? Well not so much. We have been to several in our area and we are still looking. It is incredibly hard to find a church home when every one that we walk into is compared to New Life Assembly in Lewistown Montana. The kids (and all of us) are really missing our family in Montana. We love you guys!

One of the biggest struggles is finding a church in which Ethan can be in the sanctuary with us, and not be seen as huge distraction. He is three, and sitting still is not something that three year-olds do well. But he can't be left in a classroom because of his seizures. This has opened up my eyes to a whole group of people that are probably left out in most churches. Families that have special needs kids. Do we see them in church on Sundays? Or do they just find it easier to stay home? I know I have felt like staying home on more than one occasion. 

There are so many families in our communities that face the challenges of raising these extra special children. As the body of Christ are we reaching out to them? Going beyond our comfort zone and helping them? Isn't that what the love of God is really all about? If we don't have a place for them in our churches how are they ever going to hear about a Jesus? 

Just a thought...

Could this be a new direction and ministry that the Lord is leading us into? 

Maybe

15

First I have to announce that today is  Day 15.
Praise the Lord! We have gone 15 days with out a tonic clonic seizure. Normally we see about 10 to 14 days in between the big seizures. So today was worth celebrating. 


For those of you wondering, yes he still has drop seizures everyday. However they seem to be getting less severe. He will just drop his head now, instead of crashing to the floor. He is doing so much better than a few weeks ago! After dealing with this syndrome for over 10 months now, we know that all this can change in a matter of minutes. But we are focusing on right now, and right now he is doing well. 


Today we made a trip into down town Seattle to see the ketogenic specialist. It was really quite uneventful. We decided to make a few changes to his meds, and also increase the MCT oil that he is taking. So now his medicine regiment looks like this:


Morning Meds:
625 mg of Depakote
750 mg of Keppra
330 mg of Carnitine
1/4 tsp. Baking Soda
10 grams of MCT oil


Lunch Meds:
1/4 tsp. Baking Soda
1 Flinstone Vitamin
1 Drop of 1000 IU Vitamin D
1/2 tsp. of Calcium Carbonate Powder
10 grams of MCT oil


3:30 Meds:
1/2 tsp. Calcium Carbonate Powder
10 grams MCT oil


Dinner Meds:

625 mg of Depakote

750 mg of Keppra

330 mg of Carnitine

1/4 tsp. Baking Soda

10 grams of MCT oil

The doctors were glad that he is having fewer drops. By increasing his meds and MCT oil they are hoping to see them all go away. Now it is just the waiting game all over again. :) Nothing happens quickly in the world of epilepsy. We are told over and over again, "Each child is different and so we just have to try things and see what works." 

Ethan had a wonderful day and was very cooperative with the doctors. I am amazed at how smart he is! He has spent a lot time in hospitals so he knows the drill. Today the nurse asked him to take his shoes and helmet off so they could put him the scale. He said, "okay" then sat down took his helmet off, shoes and then socks....at this point I had to stop him because if it was up to him all of the clothes would have come off. :) He was very happy while in the office and even tried to get the doctor to read him a story. 

Some things that you can pray for:

Wisdom in decision making

That Ethan will be completely seizure free

School for Isabelle and Isaiah

A smooth transition as we are adding medications


Thank you so much for your continued prayers!

Love

Picture of the day....

These two are buddies. 

Ethan has had quite a few drop seizures in the last few days.

The skin is even rubbed off of his nose from when he hit the carpet on the stairs.

Isaiah is there to pick him up, or sit with him, or get us if he has a tonic clonic seizure. 

Such a caring big brother. Even when they are wrestling (as boys do) he is still protecting.

The love between the two is evident. 

They are brothers.

There are three things that will endure 

-- faith, hope, and love -- 

and the greatest of these is love.

1 Corinthians 13:13

Truth

As each new day unfolds I find comfort in these words, "Do not be afraid." 

The Lord is constantly reminding me that He is there. 

This is the truth.

We all have choices to make everyday.

I will choose to follow his voice.

The truth.

"So we say with confidence, "The Lord is my helper; I will not be afraid... " Hebrews 13:6


The lyrics to the Casting Crowns Song:
Oh what I would do to have
The kind of faith it takes to climb out of this boat I'm in
Onto the crashing waves

To step out of my comfort zone
To the realm of the unknown where Jesus is
And He's holding out his hand

But the waves are calling out my name and they laugh at me
Reminding me of all the times I've tried before and failed
The waves they keep on telling me
Time and time again. 'Boy, you'll never win!'
"You'll never win"

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a Sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name and he laughs at me
Reminding me of all the times I've tried before and failed
The giant keeps on telling me
Time and time again "boy, you'll never win!
"You'll never win"

But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me

I will choose to listen and believe the voice of truth

Ketogenic Meals

I have often heard the expression, "You don't fully appreciate what you have until it is taken away." 
I don't know that I 100% agree with that statement, but after making keto meals for Ethan I SO appreciate being able to make a simple "normal" meal for my family.


Here is how Bob and I spent a good portion of our day today:

All of these little dishes represent 6 meals. Each ingredient must be weighed out before the meals can be made. We were pre-making and freezing pizza meals. Ethan's eating plan consists of 4 meals a day at 313 calories in each meal. The meals are also set at a 4:1 ratio. Meaning 4 parts fat for every one part carb or protein. All of that to say, it is a lot of work!


Did I mention that I SO appreciate being able to feed my other children with out having to calculate out every single bite?


All of these little dishes turned into these:

This is one of his new favorite meals. PIZZA! It is made out of macadamia nuts, olive oil, cheese, egg whites, tomato sauce, pepperoni and mayo. Sounds yummy huh?

We also pre-made and froze his pancake meals (sorry no photos.) They are also from a macadamia nut base. 

I love that we found these recipes that we can pre-make and freeze for him. It sure cuts down on time in the kitchen during actual meal times. With a family of five I already spend a lot of time in the kitchen. When you add keto meal prep time it seems that I never leave the kitchen. Praise the Lord that we found a way to pre-make some of his meals. :)

On a seizure note: Today was a little strange, lots of quick drops. No face plants (Praise the Lord!) There were also lots of small seizures where he would just crumple to the ground. Kind of odd we haven't see very many of these lately. But today we saw quite a few, mostly during meal times. 

Everyday we pray for healing, and every night before we go to bed we all pray again. Every child takes a turn to pray and when Ethan's turn comes he ends his prayers with "thank you for healing me." Oh the faith of that little boy. 

"for we walk by faith, not by sight" 2 Corinthians 5:7

Joy

Ethan having a wonderful moment with his brother:

Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them." ~ Psalm126:2

Snow

We got snow today! The kids were so excited, and a little confused.

Some of the comments we heard were, "But it is not even cold outside" and "Are we going to have to shovel?" It was a very different kind of snow, (more like slush) but none the less it was snow. Isabelle was disappointed that there wasn't enough for a snow man, but the weather man says it is suppose to snow again tomorrow. She is hopeful. We all enjoyed a snowball fight! Even Ethan.

He had a blast. It was the first time, in a long time that he was outside with out a helmet.

Isabelle was showing no mercy! She was getting me with snow while I had the camera. 

It was definitely a fun time. 

Ethan has been having a few more drops since we have been in the house. I am wondering if increased activity has anything to do with increased seizures? It seems that any time he gets excited, or expends a lot of energy the seizures get worse. It may be an early to bed night. For now we will enjoy dinner and see how he does. 

Blessings to you all.