Sunday, January 29, 2012

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

Monday, January 23, 2012

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!

Friday, January 20, 2012

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







Thursday, January 19, 2012

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

Wednesday, January 18, 2012

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

Tuesday, January 17, 2012

Joy

Ethan having a wonderful moment with his brother:


video

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

Saturday, January 14, 2012

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.


Tuesday, January 10, 2012

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.


Sunday, January 8, 2012

We Made It

Three days without daddy is a long time! But we managed and even had some fun.

I was shocked at how peaceful it was. I was anticipating a very LONG weekend as meal times can be so challenging with two adults. To think about doing it all by myself was not a happy thought.

On Friday after dropping the kids at school Ethan and I went to the park. It was such a fun time! Very cold but fun. He didn't have any drop seizures at all when we were there. Then we made lunch, Ethan had a nap and the kids needed to be picked up. Dinner went rather smoothly and then all four of us played out side for awhile.

Saturday was even more fun. We spent most of the morning building a fort in the living room.


I think they managed to use every blanket in the house.  

Then we watched some movies and had a relaxing evening.

Sunday was a whole different story. Ethan started the morning with a grand mal seizure. Which threw off his morning medicine routine because then he slept for a couple of hours. When he woke up I gave him his meds, but he continued to have have hard drop seizures all day long. Kind of sad we were having such a good long stretch of very minor drops. Today he had some hard face plants. Here is a picture of his face this evening. Poor guy hit his head on the table during one of his meals.


Under his left eye is all swollen, and red. He cried for a few minutes when it happened but then continued to eat. He is such a trooper.

Dad just showed up and the kids are jumping on him. :) I am breathing a breath of relief and so happy to see him for more than one reason. :) Praise the Lord for his Mercy and Grace. I am so thankful for the helper that he has sent to me in life. I love him more than words can say. 


Friday, January 6, 2012

He likes it!!!

Today was the first day of 3 without daddy. It is definitely going to be a challenge.

This was the first day that I took Ethan with me to drop the other kids off at school. As to be expected we had some staring, laughing, and pointing at Ethan's helmet. It is good that he is still oblivious to the whole thing. :) Isabelle however I think takes it a little harder. When we got home from school today I asked her how it made her feel to have Ethan with when we went to school. She said, "I was embarrassed." It was a good talking time to let her know that her feelings are important. She also  got a chance to ask a lot of questions. I tried to let here know how much here brother loves her and that he is not trying to embarrass her. :)

Isaiah had some good news today, he got a new math partner. He was paired with a kid the first day that he started school, and since then this child has been really mean. Today the teacher saw him being mean first hand and put Isaiah with a different group of kids. Isaiah was SO excited. He kept saying over and over again, "The kids in the new group were so nice, they even let me have a turn." He is also loving the library! Ahhhh! Just like his mom. He even made friends with the staff and is learning the system of putting books back on the shelves. He loves it!

As I posted earlier we are struggling to find things that Ethan will eat. Most of his meals consist of heavy whipping cream because this is the easiest way to get all of fat in that he needs. Lately we have not been able to get him to drink it. Well today I found a pizza meal from his dietitian that put the fat into the meal and there was no cream!! Wonderful. It took about 1 hour for me to measure and weigh all of the ingredients and then more time to cook it. So I was really praying that he would actually like it.


When he saw it come out of the oven he was SO excited. 

Then when he started eating it, he was laughing and smiling. He was saying "um good!" Dinner was no chore tonight! Praise the Lord! He liked it!



It's the small things that make me thankful.

Oh and another good thing about this day? I totally rocked at bowling on the wii. I won by one point. :) 
All in all it has been a great day! We did miss daddy but only two more days and he will be back.

Wednesday, January 4, 2012

Challenging Meal Times

Today was a fun day! We did some organizing and tried to write down some ways to be more prepared with our meals in this house. It can be quite time consuming to make 3 meals for most of the family, and then 4 separate meals for Ethan. It generally takes a good 15 minutes just to weigh out all of the ingredients for his meals, (and those are the more simple ones.) Then we still have to cook them, and of course get him to eat them. Because his meals are what is making him better, he has to consume every bite to make the diet work. THIS CAN BE SO CHALLENGING! I would say from the time we start making his food to the time that he actually leaves the table can easily be 1 to 2 hours. Then we still have everyone else to feed. :) I have been looking up a lot of crock pot meals for our family that seems to be helping. With the food in the crock pot all day we eliminate the time in the kitchen. We have also been in constant contact with Ethan's dietitian to come up with more options that he will actually eat. Believe it or not I am finding it really hard to put the amount of fat into his meals that he needs and still make it taste good. 


Ethan started off the morning by having a gran mal seizure. :( It lasted about 3 mins. It had been 17 days since the last one. Through out the day we notice about 4 drops, and of course the myoclonic seizures that led up to the grand mal. He was very cranky yesterday. Bob and I both knew something was wrong before it happened. It is strange how Ethan will start acting funny as if to warn us before it happens. He slept for a couple of hours after the grand mal, and didn't finish his breakfast as he was in the middle of it when the seizure happened. 


Isaiah is quite the trooper, just steps up to the plate and helps out when Ethan is seizing. He went and got the emergency meds and stood by to help if he was needed. 


We are all learning a lot from each other everyday. I think that today we were reminded how special each one of our children are. They are all unique, and placed in our family by God so that we can love them. It is so much fun to watch them grow. 


Here is what happened tonight during family devotions:






Ethan translates "listening time" as "time to wrestle with Isaiah"


They are great bunch of kids, I am so thrilled that they are mine. :)



Tuesday, January 3, 2012

Prayer Request

Please pray for a friend of mine who has a little one with doose syndrome. He has a hard time lately and none of the medications seem to be working. You can read about him Here. It breaks my heart to read about the hard times that this family is going through. As a mom of doose boy I know what it feels like to sit helplessly by and watch and wait for the seizures to stop. I say "helplessly" because that is how it feels, but I know that God is my help. He is the one thing that remains the same all of the time. He loves these kids so much more than we ever could. 


God is our refuge and strength, an ever-present help in trouble. Psalm 46:1

Monday, January 2, 2012

The End of the Season

I would like to keep our Christmas decorations up all year round. :) If Bob had his choice they would have been down yesterday. So we compromised and I got one more day. Yay!!! The sad part? Today we had to put everything away. Isaiah and Ethan helped me make a mess, oh I mean put the decorations away. It was really a lovely afternoon.



Today was also a good day in respects to seizure control. We didn't observe any hard drops from Ethan. We still have his helmet on while at the table or outside because if he does have a drop, his head is the first thing to hit the ground. He is not fond of the helmet anymore, especially since we have been letting him take it off.



He was joyful for the most part but I still think that the meds are making it hard for him to focus. We can tell him to do something over and over again, and he will not pay any attention. (ok I know that you parents are thinking...normal for his age) But even when we get him to look at us he will still repeat what he wants to do, and not even acknowledge what we said. Not sure what to think about that. We will keep trying. :)

All in all it was a wonderful day full of happy moments from all three kids. :) Thank you Lord for blessing us with a great day. :)

Sunday, January 1, 2012

BELIEVE

This year we choose to BELIEVE. Putting away the things of the past and looking forward to what God has for the future. 2011 was a hard year. We spent a lot time in Hospitals with Ethan. This year we believing for a healing!


This morning at Canyon Creek Church the pastor spoke on believing. I thought to myself, "Do I believe?" After months and months of seizures it is honestly easier to just except that this is our new way of life. I must not do that. I know that God has his timing and I choose to believe that Ethan is going to be healed. 


Right before leaving for church this morning we thought that Ethan was going to have a grand mal seizure. He had several drops, and fell to the ground. After a few seconds he looked up at us and wasn't sure why he was laying on the ground. Kind of strange for all of us. Is this a new kind of seizure? or is this God healing him before he had the grand mal seizure? I choose to believe.


We have upped his dose of MCT oil to 8 grams with every meal. Because of this we are seeing very few drops. If we do see his head fall it is becoming more of a "small drop." We are so thankful that we are not seeing him crash into the floor 20 times a day anymore. 


This new year will bring many new things to our family, but most importantly it will bring an increase in Faith.