Good Night 2011

As we say "goodnight" to another year we are reminded of the many blessing that were sent our way this year. We are so thankful for all of those who are praying for us, and praying for the people of Indonesia. Today I was reminded of that wonderful song that goes, "Count your blessings name them one by one, count your blessings see what God has done...." There is so much to be thankful for! Here are just a few of the things we came up with:


We are thankful for
1. Friends and Family
2. Ethan's progress on the Keto diet
3. A place to call "home" here in Washington
4. Great teachers for Isaiah and Isabelle at Discovery Elementary
5. God's provision in our lives
6. The plan that God has for our family

Merry Christmas

We are so thankful this time of year for so many things. We are warm and cozy in our temporary housing here in Everett Washington. Yes you read that right, Washington. After much prayer we made the decision to move closer to the medical treatment that Ethan needs. Not every hospital has a Neurology team and a Ketogenic team. We need both. :) The Seattle area has a wonderful team that is working with us and Ethan to help stop the seizures. Again we have so much to be thankful for! Since arriving in Everett, (just north of Seattle) we have seen a huge decrease in seizure activity. The process is going to be long, but we know that God is with us. Everyday we look at all three of our kids with a new found sense of wonder and joy. They are all such a blessing, and each day that we get to spend with them is a gift from God.
Thank you so much for praying for our family. We are ready and waiting for the God to provide a miracle for Ethan, but we are also learning SO much in this time of waiting. Merry Christmas to all of you!

Our Keto Kid


These last few weeks have been crazy busy to say the least. A we have been in Colorado, Nebraska, Wyoming and Montana sharing our love for missions. Along the way we have met so many amazing people who have been praying so fervently for us. People who also have a heart for the lost. We are so thankful for each and everyone of you! 


As we traveled, we also had the opportunity to have many of you pray with us over Ethan. Thank you, Thank you, Thank you! He is making strides of improvement everyday. While we were in Colorado Ethan was admitted to the Children's Hospital to start the Ketogenic diet. We were not seeing any improvements with the medications that the doctors had him on, so we were told about a medical diet that would sometimes work for kids that had very hard to control seizures. The process would be hard, but we were willing to try if it meant that Ethan would possibly stop seizing. We admitted him on a Sunday and he was to fast for the first 24 hours. Then the nurses started him on a high fat creamy formula the next day. The third day he was allowed to eat solid foods, but everything had to be calculated down to the gram. There is no sugar, and very few carbs on this diet. So Ethan gets his calories through fat. 80-90% of the meals come from fat. He is now drinking heavy whipping cream instead of milk. Yes it has been a challenge to change how we feed him, and keep track of every gram of food that goes into his mouth. But it is so worth it!!! We are starting to see his personality come back. He has gone from hundreds of seizures a day to maybe 5-10 drops a day. We have only seen one Grand Mal (Tonic Clonic Seizure) since we started the Ketogenic diet. Over and over again my heart screams out, Praise the Lord!!!  We know that we still have a long road ahead of us, but we are seeing improvements. For the first time in 5 months!!! He is playing and happy! (well most of the time) This is so great! Thank you so much for your prayers. 


The following is a video of our journey through this type of epilepsy called "Doose Syndrome" 


*Warning: There is actual footage of seizures on the video.

Denver

We have been in Denver Colorado for 5 days now. This has been a rough five days, but I know things will only get harder before they will get better. God has promised us that he is always with us, and for that I am so glad. But before I get into what is happening now let me start back at the beginning of our trip, 5 days ago....


We have been waiting for 2 months to get into the Ketogenic Clinic at Childrens Hospital in Denver Colorado. The medications that they have Ethan on are just not working, so the ketogenic diet offers the hope of less seizures just by changing the child's diet. We have heard stories from other parents, (who also have children with doose syndrome) of how the diet has helped the seizures decrease, or completely stopped the seizures all together. Because of this we want to give it a try. The statistics say that it will help 2 out of 3 kids, and that 1 out of 3 kids will see there seizures disappear completely.

So last week we drove down to Denver to meet with the neurologist, and the ketogenic team of nurses. The doctors don't really have any new information for us. They are still running tests, and now they are looking into genetic testing. Ethan has been having quite a large number of drop seizures (this is where he will just fall over without warning) and he is pretty banged up because of them. He is falling all the way to the ground now when they happen, usually hitting his face or head. Praise the Lord for the helmet. 


During his good moments he has enjoyed the Ronald McDonald house that we are staying at. They have a large indoor play area for the kids (That is mostly carpeted...PTL) and they have a great outdoor area as well with slides and other play equipment. 

On Friday he has having a very hard day, lots of drops, falling, bumps and bruises. Then in the evening we had planned on visiting a friend of ours here in Denver for dinner. Well just as we were getting ready to leave Ethan had a tonic clonic seizure lasting almost 5 mins. I was so thankful that it stopped at that point because we didn't have to administer the emergency medication. He then was very tired and slept quite awhile. Our wonderful friend, that we were suppose to visit just packed up dinner and brought it to us! Thanks Brittany. :)

Brittany and Ethan on Saturday

I love how good my God is! Would you believe that while we have been here at the Ronald McDonald house God has still been speaking to us about he people of Indonesia? We had the awesome opportunity to meet a family that is from the Island of Sulawesi in Indonesia. This sweet lady is here because of doctor appointments with her little girl. She grew up on Sulawesi, and had so much fun sharing about her life there. She also spent some time helping Bob read his Indonesian Bible.

We are now gearing up for tonight. Ethan will be admitted to the hospital to start the ketogenic diet tonight at 6:30pm. This will start with a 24 hr fast. Please be praying for us during this time. Ethan has been very grumpy because of all the seizures, and I know that this will only increase when he is fasting. Monday and Tuesday will be hard days, but we are looking forward to learning this new diet, and seeing the seizures decrease. 

Through this time we continue to trust God in all things. I am reminded of Psalm 32:8 "The Lord says, 'I will guide you along the best pathway for your life. I will advise you and watch over you.'" God is so faithful, and we are thankful that we serve a God that is so much bigger than Epilepsy. Thank you all for your prayers!

Our new normal


Life has been a little crazy this past couple of months. Itineration is in full swing and we are traveling lots! Just about every weekend we have had the opportunity to share at various churches what we believe God has called us to do in Indonesia. 


Then out of the blue at the beginning of April our lives changed forever. Ethan had a number of seizures, and the doctors were unable to determine a cause. This is when we were first introduced to the word epilepsy. The doctors started him on medication that they said, "would help control the seizures." Little did we know at that time that this was going to be the beginning of a whole new way of life for us. 


We took Ethan home from the hospital the second week in April with medication that was to be given twice a day for his seizures. Well, as we soon found out the seizures were not just going to go away because we had started giving him medicine. Ethan continued to have clonic tonic seizures, sometimes 3 in one week. Every time he had a seizure the dose of medication was increased. (Which makes this mom very nervous.) Then Ethan started to develop new symptoms. He started having drop seizures. These proved to be very dangerous as we have hardwood floors in our entire upstairs. When we first noticed these we would see him just sort of nod off or bob his head a little. Then they became more frequent and he would actually fall down. I found that all I did all day long was follow him around in hopes that I could catch him if he were to have a drop seizure. At this point the neurologist instructed us to get him a helmet. Really??? 

This is when I started thinking..."we can't do anything about this?" As parents we felt helpless. The doctors treated us as if this was all a normal thing. I remember sitting in the neurologist's office when he wrote out a prescription for an emergency medication that we were suppose to always have on hand just in case Ethan had a seizure lasting over 5 mins. "Just insert the tube into his rectum and this will stop the seizure," He said.   Wait.. what??? I am suppose to be calm enough to time the seizure, and administer emergency medication? Come on now, there is a reason I never went into the medical field! I don't do well when someone is bleeding and needs a bandaid, now I am suppose to administer emergency medication to my child while he is having a seizure?  Oh Jesus help me through this. 


We continued to give him more and more medications (per doctors orders) in hopes that it would work, but we only saw him getting worse and worse. By the last week in May he was on two different kinds of medication and having up to 100 drop attacks or more a day. He stopped eating, and became very lethargic. This is when we took him to the Children's Hospital in Denver Colorado for a second opinion. It was at Children's Hospital that the doctors diagnosed him with "Doose Syndrome" also know as Myoclonic Astatic Epilepsy. This is a very hard form of epilepsy to treat. Often medications do not work. Click Here to see an example of what Dose syndrome looks like. This family has a story that is so similar to ours. 

Ethan has good days and bad days. Some days we see only a few seizures, other days we see hundreds. We are headed back to Denver in July to get him started on the Ketogenic Diet. It is a medical diet that helps kids with Doose Syndrome, when drugs fail to help. 


The main reason for this blog today is to ask you to pray. We are looking for 100 people who will commit to pray for our family, and Ethan for the next 60 days. We know that God is in control. It may sound discouraging at times, especially when the doctors keep giving us bad news, but we know the Healer!!! We would like to have 100 people bring this little boy before the throne everyday for the next 60 days. Will you be one to stand with us? If so Click Here and fill in your name so that we know when we have 100 people praying. We are also asking for individuals who would commit to fasting, (at least one meal) on Tuesdays for the next 60 days. God has a big plan for Ethan's life. We are so excited to see what happens!

old friends, new friends, & missions

Traveling! That one word could describe January, and February. We have been on the road a lot! The kids have gotten to see so many interesting things along the way, and visit with some great people. We are so thankful for those who have been so kind, by putting us up in your homes. Sometimes we have a week, or other times several days between services, but we are amazed at how God always provides a place for us to call home for a little while. Isabelle will often say, "where are we living tonight?" :)

In January we spent quite a bit of time in Minnesota. The kids were very excited because they had heard about "Lego Land" in the Mall of America. Isaiah, our resident lego expert was beyond excited. He saved all of his Christmas money from his grandparents especially for this trip. Then the day finally arrived...

Legos that were 2 stories high!

Woody made of legos

Lots of very large characters made of legos

So many legos!

A great time was had by all. People keep asking if we liked the mall, but to be quite honest we only made it in and out of the lego store, and few other toy stores then we headed out. 

From there we headed to Mankato MN. This town holds so many special memories for us. We have so many dear friends from 'Hillside' church in Mankato. A long time ago we started out ministry in Mankato with a two week old baby. Now that little guy is 10! It was so fun to catch up with friends, see the new church building, and speak on a Sunday morning. 

I found an old scrapbook page that I just couldn't resist posting!

I think these photos were taken in 2001

Here is a current photo of the same 3 boys. My how they have grown!

Also a current photo of the mamas

Fun memories! We each started off with one little boy, and now we have 9 kids between the 3 of us. 

Thank you to Aaron, Jess, Jadan, & Emery for letting us live with you for a week while we were in Minnesota! 

From Minnesota we headed northwest into South Dakota. This leg of our trip proved to be very interesting! A lesson learned, "Stay on the main freeways in the winter." You see the GPS will take you the quickest route to your next destination. However the GPS has no way of knowing which roads get plowed and which ones don't get plowed. Needless to say we drove on a road (in the dark) for quite some time in at least 6 inches of snow, praying the whole way. We finally made it to our destination with a shout of praise from the back seat. :)

While in South Dakota we also got to hang out with a very special man and his wife. Bob lovingly refers to him as, "The big fish man" He married us a little over 12 years ago, and has been a mentor for longer than that. I still remember his words from Bible college, "What are two words that will change your life? God and Try." If you haven't figured it out yet, here is a picture to help you out.

The man "Dan Kuno" It was so great to share time and be encouraged by this great man of God. 

There were many stops on this trip, and many times we shared our passion to see the Indonesian people come to a saving knowledge of Jesus Christ. God is moving, and everyday we are one step closer to getting to Indonesia. Please keep praying for us as we travel and remember to pray for the Indonesian people. The light of Jesus is shining bright in our hearts, and we are wanting to share it.

13 For "Anyone who calls on the name of the Lord will be saved." 14 But how can they call on him to save them unless they believe in him? And how can they believe in him if they have never heard about him? And how can they hear about him unless someone tells them? 15And how will anyone go and tell them without being sent? That is what the Scriptures mean when they say, "How beautiful are the feet of those who bring good news!"  Romans 10: 13-15

Merry Christmas from the Road

We have traveled many miles in December, and God has been blessing us all along the way!

We would like to say a big thank you to all of the churches who have hosted our family this past month. We have been in so many states: Montana, North Dakota, South Dakota, Minnesota, and now Pennsylvania. 

This Sunday we had a rare opportunity to attend a service with extended family members. It was so amazing to hear from a pastor who just returned form a trip to Pakistan. God is at work all over the globe and we can't wait to get to Indonesia and do what He has called us to do. 

We are happy to be with family this Christmas. The kids are enjoying Grandma and Papa's house, and are so excited about the many presents that are under the tree. Bob and I are taking in each moment as this will be our last Christmas in the states for some time. We have so much to thankful for! 

Here are some photos from our travels this past month.

We were so blessed by Pastor Kevin and Kathy Gunion in Minnesota! They not only gave us a place to stay while we were there, but they also decorated it up for Christmas. What a special memory. 

The kids have had so much fun playing in the snow!

Lots and lots of snow!

Ethan trying to catch snowflakes on his tongue.

New Friends

service times

This child can find the donuts at any church.

Merry Christmas to you and yours this holiday season!

May His light shine bright in your home as you celebrate the King.