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.