Sunday, December 23, 2012

Merry Christmas

Merry Christmas!

We have so much to be thankful for this during this season. Most of all we are thankful for a savior who came to earth and lived among us. God chose to send his son into this very evil world because he loved us so much. We celebrate his birth at Christmas but, it doesn't end there. He grew up and died on a cross to make a way for you and for me to get to heaven. All we have to do is believe.

With all of the things that are going on in our world today, people are asking a lot questions. The truth is that we live in a sinful evil world and that is why Jesus came. The Bible says that we were all born sinners. I think that often times we would like to think that Christmas is only a happy time. But really Jesus came to save us from our own selfishness, our own wickedness. So as we prepare our hearts for Christmas day remember that He came so that you could know that there is a God and that he loves you. He came to bring peace, and make a way for all of us (sinful people) to know a holy God. If we turn from our wickedness and seek him he will be there for us.




From our house to yours.....Merry Christmas Friends. 



Thursday, October 25, 2012

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. 

Friday, October 19, 2012

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...


Tuesday, October 16, 2012

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!



Thursday, October 4, 2012

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.











Wednesday, October 3, 2012

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!

Thursday, August 23, 2012

The pathway of love



The pathway of love is not easy. The road is often, "broken and the signs are unclear." (To quote a very wonderful song.) Sometimes I get a little out of focus and start to think of what my life used to be like. You know before the seizures, before all of the medication, before....when life was just simple. A friend would call and say, "hey want to go to the park?" I would say, "Sounds great!" Then proceed to load the kids and off we would go. Fun would be had all afternoon, (minus a few fits) but mostly fun. Now...well now there are medications that can not be given just anywhere, there is food that must be weighed, extra ice packs that need to packed for the falls, extra paper towels, emergency medications, and oh did I mention that nap time is not something that is optional anymore? Nap time is a must now or the seizures will increase. See how easy it is for me to get out of focus?



If I lose my focus, I begin to fear. If I live in fear then I do not live in love. I have found myself slipping down the path of fear many times since the seizures started. Fearing that he will hit so hard that his head will split open, fearing that I will not be there to catch him, (and many times I have not been there) Fearing that someone will feed him something that is not on the diet and he will go into status and be unable to stop seizing. I could go on and on. However living in fear is not living in love. If I focus on the "What if's," I lose site of what is.

What is:
 I am a blessed mother of three wonderful children.
I have a wonderful husband to walk down this road with me.
I am learning that Jesus loves me more every day.
I am able to love and be loved in a way that I never knew.
I am overcome with compassion for families who are walking down a similar road. 


We all have a different pathway to walk. I choose to walk the pathway of LOVE no matter how broken it may be. I am learning a great deal, and I am so thankful for a God who is walking it with me.


Monday, June 18, 2012

North West Epilepsy Walk

It was such a fun day!

We are so thankful for all you who came out to walk with us and support Ethan.

Here are few of my favorite memories from the day:




Sunday, April 1, 2012

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.

Monday, March 26, 2012

Purple Day 2012

I haven't updated my blog in quite some time because well...there is not much to update.
We have good days with Ethan, (5-10) seizures. Then we will have horrible days, grand mals in the morning followed by lots of drops all day long. We have seen him fall down the stairs multiple times this month, crash into the pavement when he is playing outside, and hit furniture often. I would love to write that things are changing, but that is just not the case. If we can make it through a day with out any injuries that is a great day! We are thankful for the little things.

Lately the hardest thing that we are facing is not the seizures, believe it or not. :) The toughest part of the day is by far meal times. Ethan is refusing to eat. For all of you who have been with me when I am preparing his meals you know how time consuming it is. Then we have to sit with him and coax him to take a bite. We spend so many hours either in the kitchen, or at the table trying to get him to eat. Most parents know how hard it is to get a 3 year old to eat something that they don't like. More than likely it is just not going to happen! Well with Ethan the food is his medication, and he has to eat every bit in order for this diet to work. It is incredibly draining, but we so want him to stop seizing. Please be praying with us. We need him to eat.

He does have his happy moments through out the day. Here is a smiling moment:




Today was national epilepsy awareness day. So in honor of spreading the word about epilepsy we wore purple. (Purple is the color of Epilepsy.) Ethan put on his purple button, as he has a favorite shirt that he likes to wear. (Just about everyday.) :) He has so much in his life that he can not control, so to have control over his shirt choice is very important.

Through the tough days of this last month we know that God has been faithful. One of the hardest things for me is to continue doing the hard things everyday and not see any dramatic change in his seizures. God is asking me to trust, but I want to see results. Slowly I am learning that everyday I need Him to be my strength. I can't make it through the day with out him. We can not see the next bend in the road, but we know that He walks one step in front of us. We can feel the prayers of our friends and we are so thankful for each day that we get to spend with this precious little guy.

Thursday, March 1, 2012

Waiting

Just about everyday we get asked this question:

What are you going to do?


I would love to respond with a detailed plan. If I had my way each bullet point would have a time and a date next it. Every step would be laid out so that I could know ahead of time what to expect.

But God does not work that way. Much to my dismay he wants me to trust him. I am a very slow learner.

You see when Ethan first started having seizures we were itinerating missionaries. Which in english means that we were traveling around the country raising funds to get to the mission field. For us that was Indonesia. We are Assembly of God Missionaries so we have to have all of our funds raised before we can board a plane and leave for our destination. It took a huge step of faith for us to leave our amazing church in Montana to do what we believed God had called us to. We were almost finished with our budget. We were all set to go!

Then in a matter of minutes our world was turned upside down. Our perfectly normal two year old had his first seizure and little did we know that this would be the first of thousands.

The next few months brought may trips from our home in Montana to the children's hospital in Denver Colorado. If we were not speaking at churches on the road, then we were on the road to Denver. His symptoms only got worse with each passing day.

"What are you doing Lord?" I would find myself saying. There was no answer.

After countless emergency room visits and trips back and forth to Denver, Ethan was diagnosed with Doose Syndrome. As I have told many of our friends this is an 'idiopathic epilepsy.' There is no known cause and there is no known cure. For me this was so hard to comprehend. In this day and age with all of the technology that we have we don't know what causes this?

Again my world was turned upside down. We were getting ready to leave for one of the most remote places in the world. We had said, "Yes Lord! We will go." What is happening? Is there no way to fix what was happening to Ethan? We continued to pray. We prayed for healing. We prayed for answers. We prayed that God would work it out. Still no answers.

Then the questions started from those around us.

What are you going to do?


Our only answer was to continue to follow what God had asked us to do. Last we checked he asked us to be faithful, to trust him, and to follow him. But that all looked so different now.

Now there is no time line. There is no departure date. There is no method to treat Ethan's seizures. We are living each and ever day not knowing what the next moment will hold. Ethan could fall down the stairs and have a tonic clonic seizure at any giving moment. (that happened this week.) Or he could be doing great and have only a few head drops during the day. (It is amazing how my definition of "great" has changed dramatically in the last year.) We only know what we are going to do right now in this moment. God has a plan for the rest it. Every day I am learning to trust him more and more.

We have been seeing doctors for about 11 months now, and we still have no definite answers.

So what are we going to do?


We are going to continue to trust him. We are going to continue to be faithful to the call that we know he has place on our lives. We are going to continue to admit that we don't have all of the answers, but God does.

"God has now revealed to us his mysterious plan regarding Christ, a plan to fulfill his own good pleasure. And this is the plan: At the right time he will bring everything together under the authority of Christ—everything in heaven and on earth. Furthermore, because we are united with Christ, we have received an inheritance from God, for he chose us in advance, and he makes everything work out according to his plan."
Ephesians 1:9-11



Sunday, February 26, 2012

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

Thursday, February 9, 2012

Go where you are sent

Life has been difficult lately.

But we are still praising the one who is sending us.

He has a plan and we will be faithful to follow his voice.

I was reading a devotional online the other day called,

Theology at Midnight.

It was so very good!

The author is speaking here in reference to Paul and Silas:

"There was nothing easy about being accused of disturbing the peace, being publicly disgraced, derided, maligned and vilified. Nor was it pleasant to be beaten or thrown in prison alongside men who were truly criminals. Certainly having your legs in stocks not only meant you could hardly move, it also meant you would have great difficulty lying down. So what do you do in that situation?


It all depends on your theology. If you don't believe in the sovereignty of God, then you'll probably be bitter and angry and very discouraged. If you don't believe in a God who numbers the hairs on your head (Matthew 10:30), then you may think that something terrible has happened to you. But if you believe in the sovereignty of God, then you know that nothing can happen to you by accident. In that case, your reaction is likely to be quite different.
You pray and sing hymns at midnight.
We find the key to the phrase "Go where you are sent" in the word sent. It means that in every situation of life, Higher Hands are at work, leading you on from where you are at this moment to where you are supposed to be next. Many times those Higher Hands will seem to lead you in ways that make no sense, and you may not see any purpose in the things happening to you."

Ethan broke his streak of 28 days without a grand mal seizure. He had one on the morning of the 29th day. It makes us happy and sad at the same time. We are so excited that he made it 28 days, and at the same time we are sad that he didn't make it longer. We are discovering that this thing called, "Doose Syndrome" that has over taken our lives is not bigger than our God.

Will God choose to heal Ethan? Well we are praying and believing so. But what if he doesn't? I don't want to miss the miracles that he is doing in our lives right now simply because I am waiting for the miracle that I want to happen.

Psalm 23:1 "The LORD is my shepherd, I shall not be in want."

I believe that he is leading us, I believe that he is my shepherd, and I believe that I have enough.

Thank you Lord for showing us your grace and your mercy. Thank you for your provision in our lives. Thank you for friends and family who love and pray for us daily. Thank you for the wise counsel of those you have put in authority over us. Thank you for loving us so much!

Sunday, February 5, 2012

Four Weeks!!!!

Today marks 28 days without a Tonic Clonic seizure!! This is his longest stretch yet!!!

We attended his first Sunday school class today. He was so excited! This past week I found out that there is a special needs ministry at the church! So I contacted the teacher and she was SO nice. Ethan got to meet her and the other kids today. He was thrilled to be able to go into a classroom instead of sit in the sanctuary. The teachers were amazing! So loving and understanding of all of the kids in the room. I am so incredibly thankful to those who are faithful to the call that the Lord has place on their hearts. I don't know that these ladies will ever understand how much of a blessing they are to all of these kids and their families.

Tonight I am thankful for:
people who give of themselves to help others.
less drop seizures.
28 days without a Tonic Clonic seizure.
the prayers of family and friends.

Thursday, February 2, 2012

February

Today marks 25 days without a tonic clonic seizure from Ethan! SO happy about this.
He is still dropping lots, but we are also making diet changes so I am expecting the drops to continue for awhile. Once he is adjusted to his new meds we are praying that the drop seizures will disappear. Will you pray with us?

Also today is February 2nd. Can you believe it?

Bob and I decided that we were going to do something fun for the kids that coordinates with Valentines Day. So I have been working hard on sewing felt envelopes for the kids. (Thanks Pinterest for the Idea) This is how they turned out:


We presented them to the kids yesterday. They were very excited! "What's in them?" they wanted to know. "Lots of love," we told them.  For the month of February as a family we will put love notes (and other surprises) in the envelopes. Then each morning we can check our own envelope for mail. Isabelle's eyes lit up. "You are going to write me a note?" She asked. "Yes and you can write notes as well."


The kids were so very excited that they hard time sleeping last night. Then this morning they rushed out to see what was waiting for them. It was so fun to see them reading their notes and also to see them get excited as others read the notes they left. 

When Isabelle and Isaiah returned home from school today the first thing they wanted to do was to write some more notes to put in the envelopes. :)

Thank you Lord for a loving family. Thank you for happy memories.



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:



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. :)