Christmas Came Early

Besides the amazing birth of our Savior Jesus Christ we have received the best Christmas present ever. As of Friday, Noah's EEG was completely clear of seizures. Praise God!!! Noah's nuerologist came into his room with a large smile on her face telling us the great news. She is completely amazed that the diet has brought him from such a truly low spot, where we weren't sure what his prognosis would be, to a complete healing. All we have to say is, OUR GOD REIGNS!!

It has been almost two years since we discovered Noah's epilepsy. Last Christmas Noah began a rapid decline. We struggled for 6 months with grand mal seizures and up to 400 absent seizures a day. My eyes swell with tears remembering him suffer through the day to day of being in and out of hospitals, struggling to finish sentences, and frustrated because he didn't know why he was feeling so "different" all the time. At the same time I am in true amazement that he could continue pressing on through it all.

We are so excited Noah is home with us this Christmas and not in the hospital. Noah is looking forward to going to the hospital to deliver gifts for the children that have to be there over Christmas. His love is really starting to grow for others since he can relate.

We are so grateful to God for giving us our crazy, fun-loving, lego addicted boy back. Yes, we still struggle daily with the diet but it is worth every tear (mine and his), every candy-cane we have to miss out on, and every battle of the wills.

We love you Noah Boah!!! You have no idea how much you mean to us.

Many Thanks for Thanksgiving

We've so much to be thankful for this thanksgiving. At the top of our list, Noah's lack of seizures is a miracle. Noah's last grand-mal seizure was last march and his absence seizures subsided in July. Throughout this crazy past year, there have been so many people that have been a huge help for us. Here's a short "thank you" list for many of those people who have made where we are at now possible.

I am so thankful for Candice and am amazed by all of the work that she has put in. (Since I, Jon, am writing this, I get to thank Candice first:-)) Thanks for pushing through each long day and late night of making food, many times of utter frustration and a never ending stream of dishes and spatulas.
Thanks to Bud and Cassie for all of the support you have given us, in so many ways. Thanks for watching Zaiah and Caleb for the nights we were in the hospital. Thanks for selflessly giving your time, energy and resources to help us through the past year.

Thanks to Mom and Dad (Papa and Grandma) for praying for us and for keeping the K Falls community in prayer. Thanks mom for coming up and helping us, a couple of times.

Thanks to our friends at Seaside Church and community group. Thanks for many prayers, meals, hospital visits and even anonymous financial help. Bethany, thanks for coming over and helping with the late night diet cooking parties.

Thanks to Noah's doctor's and dietitians at Mary Bridge and Swedish hospital. Thanks for the way you care for kids with epilepsy. Thanks to Noah's dietitians for moving us up in the schedule to start the diet, for spending many hours getting Noah's diet going and for answering many emails with questions.

Thanks to my boss and coworkers here at camps. Thanks for your prayers and support. Doug, Erik and Shane, thanks for listening and caring as we have wrestled through this time. Thanks for time off and for covering for me, while I was off.

Thanks to everyone who has prayed for us and supported us in many different ways. We are richly blessed with so many people who love and care for us.

Finally, thanks be to God, who has richly blessed us with all of the above.

Medications

I got so wrapped up in all the events of September I forgot to mention that we are starting to taper off some of Noah's medications. This is so exciting since he is on so many right now. Noah
has been on Keppra since April 2010. We are not concerned about his seizures appearing again since he has been on Keppra for so long and it hasn't been helping since last Christmas. The thought of eventually tapering off of his other non-convulsant scares me very much. Thankfully, we are doing one at a time.

Also, even though it has only been a few weeks and we have gone down very little, Noah seems to have extra energy in the afternoons. More than we have seen in a long time. Praise God for

his blessings!! He had a blast walking around camp yesterday trying to find the biggest puddle he could jump into.

Thanks again for all the prayers and encouragement!!

September...one crazy month!

September was a busy, busy month. Noah started Kindergarten and has been loving every moment. He is learning to read, add and subtract and making lots of new friends. I was a little reserved about him going since we had just started his "miracle diet" a few months before. The biggest concern was snack and lunch time. Everyone in his class takes turns bringing and sharing snack. I thought this was going to be a big struggle. My brave little man has proved me wrong. He hasn't once complained (although I know it is difficult). I have a surprise bag that he chooses from on days I know he needs a little "pick me up". Today for instance was a friends birthday at school so the whole class had special cupcakes, his cubby had a bag full of candy, and he got to take home a special bag from school to practice sorting (of course the item to sort and then eat was M&Ms). He was very happy to exchange his candy for a pair of goofy glasses. Noah is a champ!

Since Jon's summers are so busy we always take our vacation in the fall. A week after school started we planned Noah's meals out for the week, packed out van and headed to eastern Washington to go camping. The first night there I (Candice) started having severe stomach pain. I ended up in the ER in Wenatchee with appendicitis. My parents drove over to watch the boys during my surgery and then took them home while I recovered. We are so blessed to have amazing family nearby who we can fully trust to make Noah's meals. It was such a blessing to have most of his meals already made since we were planning on camping.

Shortly after recovering from surgery we went to Disneyland. Yay! We had been looking forward to this trip for a long time. There were many times in the past 6 months where we did think we would be able to go due to Noah's seizures. We are praising God for his "miracle diet" and the fact that he can enjoy his life like most other 5 year old boys. Once again my mom and I spent days preparing his meals ahead of time and it really paid off. We were all able to relax and enjoy our trip without worrying about what time we would be back at the hotel room to make his meals. Noah was a trooper and did amazing when the rest of the family had something different than him. Noah loved every single ride he went on (arms always waving in the air) and because of his epilepsy we were able to get a pass that skipped all lines! We joke about putting the pass on ebay. I am sure we could make a fortune.

I know Disneyland will be a trip that Noah will never forget. It was so fun to see his eyes light up whenever he would see a character he knew. After a year of many ups and a lot of downs it was a huge blessing to have a week forgetting about Noah's struggles and enjoying having fun and being with our family.

Oh...and in case you were wondering about seizures...what seizures?!?

It's almost time for kindergarten...

We continue to be incredibly thankful for Noah's progress on the diet. Candice is daily figuring out new recipes for Noah to have on his diet, as he is getting tired of many of the same items. It is especially difficult since Noah doesn't like his cream in soda anymore and we haven't found a good substitute to replace it.

Thursday Noah starts Kindergarten. Yay! Noah has been looking forward to Kindergarten since the middle of last year. He likes to practice "his work" at home and tells Isaiah about all the writing and projects he gets to do. We are so excited for him especially since a few months ago we were thinking he was not going to be able to go due to his seizures. Praise God that he is doing so well. It would have been heartbreaking to tell him otherwise.

Kindergarten is going to be so good for Noah and at the same time we are sure it is going to be difficult. He will be having snack as well as lunch there along with his other 11 classmates. This means 11 birthdays and 11 birthday cakes that Noah will have to miss out on as well as holiday treats and daily sitting next to his classmates with all of their "non-diet" food. Noah is such a trooper and we know he will do great but seeing other food is really a struggle for him.

We have to daily remind ourselves how amazing Noah is doing on his "miracle diet". It is so easy to get wrapped up in all the hard work and feeling sad for Noah and all the things he ends up missing out on. God is so good and we continually need to count our blessings. We are so thankful this won't be a lifetime diet and we have already made it through our first summer.

Thank you again for all your love, support, and especially prayers!

IT WORKS!!

Noah had his 24hr EEG on the Thursday and on Friday morning Dr Simon was very happy to tell us that Noah isn't having any seizures!!! He had a few discharges while sleeping but no true seizures. I think we are all kind of in shock right now and it hasn't truly set in yet but we are very excited too.

In the hospital they checked all of his levels again and he again is in acidosis so we have been giving him a teaspoon of baking soda a day and his whole personality and energy is back. This is almost as exciting as being seizure free.

We have been telling Noah how proud of him we are and are so excited that he isn't having any seizures and his response is "God did it". He has his ups and downs but overall he is doing amazing on this diet and is truly trying his best. We couldn't be more proud of him.

Thank you so much for all your prayers!!! I can't believe after all Noah has been through for the past 1 1/2 years that we are telling you right now he is seizure free.

If we had the choice for Noah not to have epilepsy we would take it in a flash but God has truly worked in our hearts and family so much during this time and for that we are so grateful.

"When I'm done with my diet, I am going to..."

We are now almost two weeks into the 4:1 ratio and Noah's seizures seem to be lessening! Noah still may be having the absence seizures but visually, to us, the seizures are much improved. Next Thursday, we will be in the hospital for a 24 hour EEG to see if things have indeed been improving.

Noah's response to the 4:1 ratio of foods has been mixed. He has a few favorite meals that he eats without problems, but most meals we have small issues and frustrations. Even though we are thankful for what the diet seems to be doing, we are all already longing for the day (which could still be years away) when Noah is done with this diet. Yesterday we went to a local farmer's market and Noah told us, "When I am done with my diet, I am going to go to the farmers market and get ice cream!" Overall, he seems happy, but we know this lifestyle is taking its toll on Him. Also, Candice spends 2-3 hours in the kitchen each day, making Noah's snacks and meals since every snack and meal takes special attention to get it perfectly right. We long for the days of stopping by McDonald's and paying a small sum of money to have someone else make our food!

Bud and Cassie, Candice's parents, have been incredibly helpful on this journey. Candice and I have enjoyed a few date times and Cassie knows how to make Noah's meals and snacks. It is a very welcome break from the routine, when Noah goes over to Nana's house!

As long as Noah's EEG comes back positive, we will be continuing on Noah's diet for the indefinite future. We will also begin scaling back the two seizure medications that Noah is currently on. Although long term, it will be great to see if Noah can be seizure free without medication, in the short time it will be another season of learning to trust in God as we taper back the meds. Although life has been super crazy since Noah's very first seizure 1.5 years ago, we have so much to be thankful for and God continues to bless us with so much.

We've Made It

We have officially made it to 4:1 and we are here to stay. I am so excited to be on a 4:1 ratio now. This means if the diet is going to work we will be seeing results anytime between now and the next 2-3 months. This makes it all worth it. It has been very hard (for all of us) to be working so hard at this diet, knowing that we aren't even up to the right ratio, but we are here now.

Noah is doing amazing at eating his food! He definitely has his ups and downs and his portions are so small that he feels hungry often, but he eats and tries everything I give him. Whatever happened to my picky eater? I don't know but I am so thankful for his willingness to work with us.

The kitchen is no longer a fun place for Noah or myself. Some days I wish we just didn't have to eat. I would be totally fine never seeing a gram scale again let alone butter and whipping cream and I know Noah would love a giant chocolate chip cookie and a tall glass of milk right now.

For now, we are doing our best to make things happy and fun. Yesterday, we took Noah and Isaiah to see Winnie the Pooh (their first movie in the theater). I was able to make Noah some popcorn covered in butter. He loved it! It was so much fun to get away and do something fun and new together.

Although this diet is so extremely hard and there are days we all want to give up, we are in it for the long haul. If it helps Noah seizures it is worth every second in the kitchen, every frustration over spilled cream, every cookie and candy we have to pass up, and every tear. Noah is such an amazing child. We are so grateful for his cooperation and overall great attitude. We love you Noah Aaron!!!

Poke, Poke, and More Pokes

Poor Noah has been suffering from low blood sugar for the past week. Of course it always happens over a 3 day weekend when you cannot talk to your physician. Thankfully, we have a wonderful and loving camp nurse who has been more than willing to help us with taking Noah's blood sugar since we didn't have a tester. His blood sugar was down to 40 a few times and average is probably mid 50's. Apparently, this is not as severe as we were thinking. I talked to Noah's nurse on Tuesday and she said when you are in ketosis you may have low blood sugar but it doesn't usually cause you to be as symptomatic as you would be not in ketosis. However, he has been pretty symptomatic, especially in the mornings. He wakes up very irritable, lethargic, and mumbling his words (pretty much the same way I do). We have given him a few teaspoons of apple juice a few times and he immediately perks up. I have been making his breakfast right away in the mornings and we split his lunch up into 2 snacks so that he doesn't go as long with out eating. This seems to be helping.

Other than his blood sugar he seems to be doing pretty good. He is doing just fine on a 3:1 ratio. We are going to give it another week to hopefully normalize his blood sugar and then we will be bumping up his ratio one last time to 4:1. It will be nice to finally be at 4:1 for many reasons. Hopefully we will start seeing some good results of this diet and less seizures and also I will be able to start mass producing some of his meals. We keep changing his ratio so I pretty much just do one or two meals at a time but when we are on 4:1 I can plan for the long haul.

Thank you again for all your continued prayers for Noah. We are finding some good recipes that he is enjoying. Lately, his seizures seem to be decreasing but his kind of seizures are really hard to notice, so until we have an EEG (hopefully in a month) we won't know for sure.

Here are some pictures of what Noah has been up to lately.

Noah and Jon tubing behind Nana and Momo's boat.

Climbing trees and being a monkey.

Singing on the 4th of July down at fireside.

Noah got a "Houie" just like Isaiah's from the doctor. They were both very excited.

Book time with daddy on the 4th of July.

Boating

3:1 ratio

We now have officially switched to a 3:1 ratio. 3 parts fat to 1 part carbs + protein. I am always surprised how much moving up one ratio makes. Noah's portions are almost cut in half because most of his calories are coming from his cream (which he still is not a fan of but tolerates it in soda). Noah has 4 meals a day (or 3 meals and 2 snacks) and each meal has 350 calories. When he was on a 1:1 ratio his meals were very large but now since most of his calories are from cream they seem so small. Even though he is getting the same amount of calories he says he is hungry often just because he isn't "chewing" much. Last night we tried miracle noodles. They don't have any carbs or protein just plain old fiber. I was nervous to try them because he is a picky eater and they didn't look good to me but thankfully he ate them without any problems. The nice thing about these Miracle Noodles is that he can have as much as he possibly wants since they don't have any calories. Miraculous, right?

Two days ago I found a chocolate peanut butter cup recipe. It contains butter, no carb and no sugar chocolate sauce, sweetener, and peanut butter. I freeze them in molds and pull them out for his evening snack. He loves them!!

Lately, Noah has been very lethargic, irritable and depressed. Yesterday, he cried for an hour and said he didn't know why. Today I took him in for some blood work to make sure everything is ok. It was nice in the hospital because they checked his blood often and we knew what was going on in his body all the time. We are now waiting on his results.

Please continue to pray for our precious boy. Its hard when you are on such a strict diet and we aren't seeing any good results yet. We still have a few months before we might see any change in his seizures. We are so thankful he is willing to try foods he would have never touched a month ago. He is being so brave!

Cap'N Crunch

Noah's diet has had its ups and downs. We are now on a 2:1 ratio and he is tolerating it pretty well. Pretty well that is until last night.

I asked Noah to go get his pajamas on before bedtime. He took off his clothes, put them in the dirty clothes and next thing I know I hear him crying in his room. I went in there to ask him what was wrong and he started balling. He could barely speak through his sobs and said "I miss my favorite cereal". Jon had been hiding Cap'N Crunch and having it after the boys' bedtime. He did a good job hiding it but after the box was empty we put it in the laundry room to be recycled. We didn't even think about him seeing it. At that point I broke down and held him and cried with him. He got over it pretty quick, however, I am still struggling with it. This is a lot harder than I thought. I knew preparing the meals would be hard but I thought he would handle the diet pretty well.

We are only 11 days into it and it is already a big struggle. Noah is often thinking about special treats to have and then realizing that he can't have them. This morning he was talking about going camping and having s'mores. He was so excited. I had to just let him enjoy the moment. I didn't have the heart to tell him he wouldn't be able to have one, in fact all of us probably won't have one.

We are trying to take this one day at a time. Sometimes I just want to give up but I know this is for the best. We are hoping to see results soon and I know that will give us encouragement. Yesterday when I was really struggling with all of this, I was reading Hebrews 11:21. It says, "By faith Jacob, when he was dying, blessed each of Joseph's sons, and worshiped as he leaned on top of his staff." Some how this brought me encouragement. Jacob was dying but he was still able to lean upon his staff and worship God. Obviously, I'm not dying. I do feel exhausted and sometimes ready to give up on this diet. I know, deep down, that I can lean on God and worship Him because He is my rock (and Noah's) and He will get us through this.

Home Sweet Home

As of 2pm this afternoon we are home! Noah woke up feeling good. All his levels were good and we were sent home :) Noah is still on a 1:1 ratio and the plan is to move up to a 2:1 in 5 days.
Being in the hospital for 5 days kind of put us in a zone. It seemed like life was on pause. It feels so great to be home and to have Zaiah and Caleb again. The boys are having so much fun together. It is funny how quickly they forget how to share :)
Jon immediately has been thrown into his summer schedule. He has been busy from the second we got home. We love summers here at camp but we do miss our daddy and husband.

Here are some pictures from the past week:

Noah drinking his first ketogenic shake. Wasn't much of a fan but did it anyway.

Jon is trying to jump 100 times before Noah finishes his shake. If Noah finished first than he got a toy, if Jon finished first than Noah had to give him a back massage.

Noah won!

Eating jello and cream. Again, not a fan. In fact, this is right before it all came back up.

After 5 hours of being stubborn about his 2nd shake, he finally drank it and then it came back up. He was wasted and slept hard. Poor guy!

Caleb visiting

Nana and Momo visiting, bearing gifts.

Sleeping hard again after another very rough day.

Zaiah playing with Noah's DS.

Evi bringing in Noah's new transformer.

Noah and R2D2.

Back to life.

Back to reality :)

Learning New Tricks

We are finding out how stubborn Noah can be, and oh boy is he ever! If Noah does not want something, in this case, heavy whipping cream, there is no way he is going to take it. "NO! No way! I won't! Uh uh! Absolutely not!" Yes, our sweet, little boy can have an attitude.
Amidst this struggle we are learning new tricks to get his cream, or whatever the struggle is, into his cute, little tummy (and little it is after being sick for so long). One way is to secretly empty a chocolate milk container and fill it with his cream along with some sugarfree/carb free chocolate syrup. He puts up a small fight each time because its different tasting than his old chocolate milk but after a short time he drinks it, especially if Zaiah has one at the sametime (Zaiah's is of course the real chocolate milk). Watching TV while he eats seems to distract him from disecting every bite. Sometimes we feed him every bite. "How are we ever going to make this work at home?" Because of his acidosis he has been having baking soda in his drinks. The only way he will take this is in Diet Root Beer (something I swore I would never give my kids, but I guess anything goes on this diet).

The really good news is that we are going home in the morning, as long as Noah continues to do good. We all miss Zaiah and Caleb and can't wait to be with them at home. They came to visit yesterday and the day before. Noah got a DS when they came and that is all Zaiah did while he was here. I don't think he knew what he was doing but he sure enjoyed it. It is always hard to say good-bye. Thankfully they are very happy at Nana and Momo's.

We are very much looking forward to being home, although I am sure it will have its' own challenges. Our boys (all 3 of them) are going to have to learn fast what its like to not be spoiled all the time. They have been receiving multiple gifts daily, haven't had to clean up from themselves much, and Noah has been watching TV almost anytime he wants. Things will definitely be changing. I'm sure things will be hard for Jon and I as well. We haven't had to do our own dishes or laundry in a week. We have only been preparing Noah's meals and getting Noah to eat them. We are interested to see how Noah's meal preparation is going to happen amidst all of our normally crazy lives. I've noticied that when I feel like adding another thing might just put me over the edge, somehow it always seems to make room for itself. I am hoping this to be the case.

While we are praying for a miracle for Noah, I am reminded of something I learned from Beth Moore.

God is who He says He is.
God can do what He says He can do.
I am who God says I am.
I can do all things through Christ.
God is alive and active in me.

Our prayer for our kids, and especially Noah right now, is that they believe in these truths. For Noah: "God is God and He can heal you completely of your seizures. You are His child and can do anything you put your mind to through Christ. He is active and alive in your life and has a great plan for you. We love you!"

Day 3

On Wednesday morning it appeared that Noah wasn't having any seizures. Although Noah's Absence seizures are hard to see sometimes we weren't seeing any of the more noticeable ones. Later on we were noticing some so he is definitely not seizure free and he may still be having up to 20 an hour. It is still super early in his diet to really see any change, however not impossible. Some children do not have any results for up to 3 months.
Noah was able to keep down 4 ketogenic meals at a 1:1 ratio. He is no longer in acidosis and his blood sugar levels are normal :) He is overall feeling great. He is getting all the sleep he needs. Jon and I on the other hand are a little puffy eyed and running on caffeine.
This morning (Thursday) Noah was able to be disconnected from his IV, R2D2. He has been playing in the play room and is so excited to be able to walk around detached from his "robot". His dietician is thinking about going up to 2:1 ratio later on or possibly even sending us home :) Instead of going with the original plan of increasing his fat daily it may be weekly so he can tolerate it better.

Praise:
Noah has an overall great attitude albeit a little spoiled :)
Noah is eating his meals and keeping them down.
Acidosis and blood sugar levels are good.

Prayer Requests:
Noah still is stubborn about drinking his cream and we will be increasing the amounts as we go up in ratio. Please pray he will begin to like it or we can find other ways for him to drink it.
Continue prayer that the diet will control his seizures.

Day 2 at Swedish

Tuesday morning we woke up to more vomiting. Noah had his blood taken (which is never a fun experience although he tolerates it) and it showed that he has high acidosis. His acid levels are high which is causing him to vomit. Although this is not good it has caused him to be immediately ketonic which is what we want for this diet. Along with acidosis his blood sugar is also low so he has to get pricks often to check the levels :( Due to all the vomiting we had to give him an IV :( This is never fun! The child life specialist (Evi) promised to bring him a transformer the following morning which brought a smile amidst the tears. We love Evi!!! After the IV and many hours of sleep Noah woke up with new energy and spunk. He has now been able to hold down two meals (both at a 1:1 ratio instead of a 2:1). Praise God! He is doing so much better. We haven't had any battles with food and he is fun to be around. His seizures seem to already be decreasing although it is difficult to tell for sure without an EEG. If his seizures end up stopping before we ever get to a 4:1 ratio than there is a chance we could stay at a 3:1 ratio which would allow for a lot more meal options. We are praying for this to be a reality.
Since yesterday morning, and who knows how long before that, a tiny baby has been screaming. Not just the kind of screaming of not wanting to be here but of intense pain. There are small intervals between the cries, when we think the baby is calming down, but it ends up just being a long breath and the wails start again. It is so heartbreaking to hear and shows us how good we have it right now even in the more difficult times.
Day 2 has had many more ups than downs and that is so encouraging.

We are 3 hours into day 3 and no signs of seizures!!! Can this already be happening? Is it really true? Our hopes are high although this seems too early to be true. We know are God is a God of miracles and nothing is too big for him. Praying for this to continue and we thank you all for your prayers as well!!

First Day and Night in the Hospital: DONE!

Well the first day and night in the hospital were filled with many ups and downs. We started the day at 5:15am with a very excited Noah. He was excited to go to the hospital (and watch TV) and excited to start the brain food diet to see if the seizures will go away. There was continued excitement upon arrival at the hospital as Noah saw a Transformers pillow on the bed and Jon saw a bed by the window that was more than a foot wide. "Maybe we will sleep good this week!"
From there, the day began to get more difficult. Noah started his first 2:1 brain food shake with mixed success (2:1 refers to the amount of Fat: Carbs+Protein, the ultimate goal is to get to 4:1 by the time we leave the hospital). Noah downed all 6 ounces pretty quick, even though he didn't like it and we were off. "Maybe this diet won't be so bad."
A couple of hours later, it was time for another shake. This time, Noah wouldn't even put the straw in his mouth. Two hours, much frustration and many tears later, we decided to scrap the shake idea and try Jello mixed with whipped heavy whipping cream. This too, took some convincing but after half an hour, he finally took a few bites. He continued eating well until his last bite, at which point his sensitive "gag-reflex" kicked in and he threw it all up. We were frustrated he had eaten it, but it didn't matter, it had all come back up. "At least he finished the meal."
Evening approached and it was time for the last meal of the day. This time, all Noah had to have was 2/3 of a cup of heavy whipping cream (with really good raspberry flavoring in it). Once again, Noah's stubborness kicked in and he refused to try the drink. We tried toy rewards, positive encouragment, threatening consequences, video games, three hours of reasoning through it and every other trick we could dream up and he still wouldn't drink. We were locked in the biggest battle of wills that we had experienced as parents. Noah was 10 sips away from the biggest party and celebration that he had ever experienced and still nothing. We were at our wits end, totally worn out and the tears and frustration were flowing. Finally, a sip, he did it! Just a few more sips and he would be done. He drank more. Then, as he took his last sip, his gag reflex kicked in and once again, it all came back up. Utter frustration. Noah had finished it, but it was all for naught. 'This day is awful."
An hour later Noah was asleep for the night. It was a crazy day, everything that could go wrong had gone wrong, but the day was done. "Maybe, tomorrow will be better."
We have learned lots from this journey. After the first day and night in the hospital, we are again realizing that though this journey is incredibly hard, we are incredibly blessed. Above and beyond all of the practical blessings of friends, doctors, great healthcare, medicine, treatments and family we have an eternal hope in God. His graciousness is amazing. The fact that Jesus chose to come down and choose suffering for us, is mind boggling. We have a hard time simply accepting the little suffering we are in, and yet Jesus, not only accepted it, he chose it. He didn't have to suffer, but he chose to. We are hopeful (and still very tired) as we start day 2.

Ketogenic Party

Last week we had a party for Noah before he starts on his "brain food diet". There were so many friends and family here to support Noah. It was such a blessing. Everyone brought gifts to make meal time more fun; plates, cups, popsicle containers, straws, etc. So fun!!

Playing hot potato. Noah actually won and we didn't even cheat :)

Having fun in his potato sack.

More hot potato.

Then our camera battery died. So sad :( It was such a blast watching Noah enjoy his friends.

Ketogenic Diet starting Monday June, 13th

What is the Ketogenic Diet?

The ketogenic diet is a special high-fat diet that is used to treat seizures. Whipping cream, fats and vegetable oils are used to provide the necessary fat. The diet eliminates foods such as sweets, bread, cereal, pasta, and milk. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be the most effective.

How does the diet work?

The special combination of foods in the ketogenic diet causes the body to use mostly fat for energy. The body makes ketones as an end result and the state of ketosis somehow helps with seizures and brain activity. The exact cause is unknown.

How effective is the diet at controlling or eliminating seizures?

Studies that have followed children on the diet for long periods reveal 1/3 of children treated with the ketogenic diet have greater than 90% seizure control with half of these children becoming seizure free. An additional 1/3 gain a 50% reduction in seizures. The remaining 1/3 discontinue the diet due to its ineffectiveness or its difficulty.

How is the diet initiated?

The diet is initiated under close medical supervision in the hospital. The diet is started gradually and increased to the full amount over a 3 to 5 day period. During this time blood sugar and ketone levels are monitored. The child may go home when he or she is tolerating the fullketogenic diet.

How soon does it take for the diet to reduce or eliminate seizures?

The diet can become effective immediately or can take several months. Each child is unique and has different seizure patterns and frequency. There is usually improvement within the first 14 weeks on the ketogenic diet.

Is the diet healthy?

The diet alone is inadequate in many vitamins and minerals. Supplements will be prescribed while on ketogenic diet therapy. The diet is used for 2 to 3 years. A regular diet is then resumed.

How can you as friends and family help?

We are not holding back information from Noah about his epilepsy, but we are trying our best to allow him to live as much of a fun and carefree life as a 5 year old boy should. This being said, we ask that you talk to us about his epilepsy and such, when Noah isn't around.

It is very important for Noah to eat only the foods that are approved for the ketogenic diet. If he finds a cracker laying around and decides to eat it, it could take him out of ketosis and back into seizures. Please do not offer him any foods or treats. Even if you know it is something that he can have while on the diet, it doesn't mean he can have it at that time. He has to have completeketogenic balance at every meal. Noah is mostly good at following instructions but this does not mean if you offer him a sucker that he will tell you no, even when he knows he cannot have one. Another thing is that any topical products such as: soaps, sunscreen, lotions, shampoos, etc all have carbohydrates in them, so he has to have special kinds of each of these products. Please ask if you have any doubts to what he may have and we will try our best to make it as clear to you as possible.

Please continue to pray for our family and especially Noah during this difficult time. At this time, we are praying that this diet would work for Noah. We are praising God that he is doing so well even while having up to 400 seizures a day. Although they may not be noticeable to everyone else they are affecting him in many different ways. Thank you all so much for your love, prayers, support, and commitment in helping us on this roller coaster of a journey.

Sample meals for Noah

Break fast: Eggs and Bacon

Butter: 16.7 grams

Bacon: 7.8 grams

Egg (XL): 38 grams

Heavy Cream: 30 grams

Lunch: Burger with Cheese

Ground round beef” 25 grams

Helluva Good cheddar cheese: 10 grams

Heavy Cream: 40 grams

Butter: 12.3 grams

Dinner: Turkey Breast with Carrots

Turkey breast: 16.7 grams

Carrots: 40 grams

Butter: 37.4 grams

Snack: Bacon and Ice Cream

Cream: 50 grams

Side pork: 21.6 grams

Canola Oil: 4.3 grams

Noah's Bumpy Road

Our family was blessed by the arrival of Noah on March 4th, 2006. A natural and uncomplicated birth; at 7lbs. 14oz. Noah was healthy, beautiful and vibrant. We celebrated each milestone of development in his first year with joy and wonder as he smiled, cued, laughed, crawled, talked and took his first steps. Besides his "Mama and Dada", Noah's blue and green "blanky" now took center stage, which tagged along everywhere he went (to this day he knows where it is every minute). Nothing could put this sweet child to sleep faster than his blanky, binky and a song of "Swing Low Sweet Chariot".

Each day was full of new and exciting discoveries: winged wonders called butterflies, the magic of the garden hose and licking frosting from the mixing beaters. Nothing changed and delighted his life more than the day his baby brother was born. Isaiah or "ZaiZai"as Noah called him became his best buddy.

Endless hours of playing with trains resulted in discovering every part of a steam engine; a very large collection of trains, yards of track and an intimate friendship with "Thomas the Train". As Noah's curiosity grew so did the size of his interest. Learning facts and names of dinosaurs soon became his passion (ask him what he wants to be when he grows up).

Preschool soon found Noah soaking up new ideas and new friends. Noah incorporated what he learned into life and then some, like the time he saw Momo's speedometer didn't match the road sign and told him to slow down.

Caleb or "giant baby" as he is sometimes called was just what was missing in his family; now the Kroekers truly house the "Three Amigos" or on some days, the "Three Stooges". All this to say that Noah is in the process of learning to be a patient, big brother.

God never promised a life without pain and struggles, just a way to handle whatever comes, with Him beside us - Sometimes carrying us "blanky" and all.

Early one morning in April, 2010, playing with his red fire engine on the floor, Noah fell face down and did not respond. An ambulance was called and he was taken to emergency where we were told he had a seizure. Because it was only one seizure his family was told it was not too alarming and he was sent home to follow up with his doctor, to the dismay of his worried parents and grandparents. Noah was not home more than ten minutes when a second seizure occured while at the lunch table. This time Noah was taken by ambulance to Mary Bridge Hospital in Tacoma, WA, where after two days of: x-rays, blood tests, MRIs and EEGs Noah was diagnosed with Partial, Complex Seizures. Epilepsy.

Relief it was not a tumor or cancer! Fear of what's next! Sadness for Noah! Tears, tears, tears! Anger and confusion! Begging and pleading with God! Trusting and believing! Breaking hearts every time another seizure took place!Lack of sleep! Resigning to what is! A very large learning curve!

Praises!!! Not once has Noah fallen and hurt himself! Every time he has had a Grand Mal seizure his mommy and daddy have been right there with him. Someone has always been able to help with Isaiah and Caleb. We love our friends and family! We are so grateful to Jon's bosses for their understanding and prayer, Jon has worked many hours from the hospital right beside Noah. God has given peace and hope, good doctors and nurses. Thank God for such a great support for our family and friends.

It is so hard to see a child, your child go through pain - IVs, blood tests, exhaustion after each seizure that he is unable to stay awake or respond. Noah is so brave; he tolerates the blood draws, but he may never get use to IVs; who does? He has a positive attitude every time he is in the hospital (especially if TV is involved). He trusts his parents and will do whatever they say he needs to do.

We have lost count of how many ambulances Noah has been in or the amount of days spent in 3 different hospitals.

Medication stats:

Keppra was started in April 2010, after his diagnosis, and then raised to a higher dosage in May and then again in Dec. and Jan. Grand Mals started in Dec. In Feb. he started on Banzel which kept the Grand Mals at bay. In April Phenobarbital was tried, which didn't work. Depakote was then tried and still no change. At home Zonisimide was given at several dosages with no positive results.

Noah's latest EEG showed that his experiencing twenty or more seizures every hour, twenty-four hours a day. These are smaller than the Grand Mals but they interrupt how he functions mentally, physically and emotionally. They also could cause cognitive delays to occur over time. After all these medication attempts we are now trying the Ketogenic Diet.