Thursday, August 30, 2012

Chocolate cookies {keto style}

I played around with the ketocuisine some more and tried this recipe for chocolate cookies. 

They are super sweet and actually remind me of a cake mix cookie or maybe the cake part of a Devil Dog.

1 g unsweetened cocoa powder
3 g coconut flour
1 g pure vanilla extract
3.5 g truvia
10 g egg, mixed well
11 g European butter
9 g keto cuisine

Make four clumps on parchment paper and bake for about 12 minutes at 350.  These cookies are so easy to make in a large batch and they freeze very nicely. 

Yay for easy and yummy cookies!

Saturday, August 25, 2012

taking the keto diet to school...

{This post it mostly for other keto/doose parents.}

Ben is about to start kindergarten!  I am so blessed to actually be working in the same building where he will attend school.  The reassurance this gives me is wonderful.  Not only will I be right across the hall from him, but I have the privilege of knowing every staff member who will be part of his daily routine. 

It has been an interesting journey sitting on the "other side of the table".  Normally when discussing students and their needs, I'm on the teacher side.  But I've learned a lot while sitting on the parent side. 

I want to encourage other parents that the school personnel truly does have your child's best interest at heart.  We want to do everything we can to help your child succeed.  So, if you aren't feeling that way about your childs' school, please tell them.  They can't fix it if they don't know what is wrong. 

We officially entered the school system in the spring as Ben started to receive speech services then.  Because of his medical diagnosis, Ben has been given a '504 label'.  This simply means that we can give him more accommodations to make him successful.  For instance, he will eat his meals in the nurses' office (and we have the BEST nurse ever!)  It really just puts some safeguards in place.  All the teachers that he will be in contact with will be made aware of his accommodations.  They can be readjusted as needed.  They are individualized to his need.  Don't be overwhelmed by a just helps keep everyone on the same page and ensures the best for your child.

I wanted to make his transition to the classroom a smooth one.  So one of the things I made is a book explaining why Ben will eat different foods.  I've looked everywhere for a simple book that explains the diet...but I haven't found anything that I love.  So I made my own.

It's a simple picture book that tells about the things he loves as well as why he has to eat different foods.  I am really happy with how it came out and I'm hoping it will help Ben be able to resist the numerous temptations that are coming his way.  The accountability of other students should help his resolve. 

I've met with our nurse again the other day and brought in all of his daytime meds.  I was also able to bring in a weeks worth of frozen meals so I don't have to worry about it getting to the freezer every morning. 

Dawn at Ketocook wrote a great post detailing how to take the keto diet to school.  Her information is wonderful!  We are just starting this process, I still have lots to learn.   Please share any tips you have in the comment section. 

I know this transition is going to be a great one!

Wednesday, August 22, 2012

cheese bread and *goldfish* crackers {keto style}

I was so happy to come across these two new recipes!  I found them on the ketocuisine website.  Both of these items are a complete 3.5:1 ratio and they are close to his calorie mark so they are easy to work with.

I enlisted the help of my mom.  I love her.  It can be so frustrating to create a meal only to have him turn his nose to it or hate it after one bite.  My niece and nephews even got in on measuring and baking these meals.  They did a taste test and both recipes passed with flying colors!

Tonight, we joined them for dinner.  Typically, Ben eats his food at the table with us, but struggles a little while we pass around the serving dishes right in front of him.  He isn't allowed one bite of what we are having (at least not served out of the same bowl).  He likes to help serve us, but it can still be frustrating. 

Well, you can imagine his delight tonight when I told him that his cousins and mimi had made some food today that was on HIS list!  And that it was on the table ready to be passed around with all of the other choices!  His cousin Andrew ate some of the crackers along with him and you could just see the joy on his face.  He loved spooning the crackers out of the bowl onto his plate as he sees everyone else do with the rest of the food. 

He LOVED the cheese bread!  He said it tasted like pizza.  It had great texure, great aroma, and looked a lot like the yummy bread we get from one of our favorite restaurants.

The cheese bread is not brand new. I've made it before, but he only ate it a few times. I wanted to try it again because my experience is that the ketocuisine makes everything taste better. I just don't know enough about cooking to really be good at creating my own recipes from scratch.

He wasn't as impressed with the goldfish crackers.  Those took a bit more prodding, but I'm curious if he'd like them better at school.  He didn't dislike them, but he didn't like them as much as he liked the cheese bread.  I need to order a tiny fish cookie cuttter to make them look like the ones his friends will eat at school. 

What a great night! 

Thank you Mom, Emily, Tyler, and Andrew for helping out.  I love you all!

Tuesday, August 21, 2012

Happy birthday to the love of my life!

Today is Leeon's birthday and I wanted to take a minute to celebrate this very special day.  His birthday always falls right in the busiest time of is gearing up, I'm panicking about not being ready, trying to make sure we have Ben's meals taken care of, etc. 

So sometimes this day feels rushed, hurried.

But without him, there would be no us.  So today is a pretty big deal.

Today I celebrate my wonderful husband...
He loves unconditionally.
He finds joy in everything.
He believes in the impossible.
He makes me laugh
He is the best dad ever.

I'm so glad that God brought us together. 

Happy birthday, Leeon

Sunday, August 19, 2012

chicken nuggets {keto style...with ketocusine}

I decided to try the chicken nugget recipe again, but this time, I wanted to use the ketocuisine

I originally got this recipe from the wonderful book, The Keto Cookbook by Dawn Martenz and Laura Cramp.

They turned out so good!  I was able to reduce the amount of egg whites and oil by using the keto cuisine.  It was easier to taste the chicken instead of so much egg white and oil.  They were very yummy!

.5 g baking powder
2.5 coconut flour
16 egg whites (whipped into stiff peaks)
19 chicken breast (shredded into the tiniest pieces possible)
18 olive oil
12 ketocusisine
12 european butter

Mix the dry ingredients.  Add chicken and stir to coat.  Add oil.  Fold into the egg whites.  Melt the butter in a frying pan and fry the chicken mixture into chicken nugget looking mounds.

I'm anxious to see how he responds to it, but Leeon and I thought it was great!

You can check out ketocuisine's fb page here.

Thursday, August 16, 2012

cinnamon muffins {keto style}

I think cinnamon is one of Ben's most favorite flavors.  I've made cinnamon muffins before, but I wanted to try them with the ketocuisine

I used:  21 g cream, 23 g of egg, 26 g melted butter and added in 3 g of cinnamon, 23 g of ketocuisine, 21 g of almond flour, 1 g of baking powder, and 3.5 g of truvia.

These muffins smelled delicious and had a nice mild flavor.  They will make a perfect portable snack and they will freeze well too.

The makers have a facebook page and you can check them out here.

Monday, August 13, 2012

soft taco {keto style}

I made Ben his taco meat and tortilla chip meal today for lunch.  You can read about the meal here

This diet is a constant pursuit of finding new things...this used to be a favorite meal, but as most other things he may love it for a little while and then he refuses it.

It's been harder and harder to get him to eat the tortilla chips because he really just wants to eat it without all of the oil on it.  He has wanted to eat it like a soft taco instead of crunchy chips.

Since May, I actually had changed the recipe so that he didn't need to have any cream with it, but I couldn't figure out how to get the ratio to work without all of the oil.

So, at lunch today, he just couldn't bring himself to eat it.  I told him that he could have a whole soft tortilla but he still had to eat the olive oil.  He actually agreed!  So I gave him 27 grams of olive oil by mouth.  I couldn't believe it.  I put it in a syringe and he swallowed it by the mouthful (three times!) and then chased it with some unsweetened iced tea. 

It was great to see him with his soft taco!  He just giggled and giggled as I wrapped it up into a real taco.  My eyes were filled to the brim as I thought about how strong he is.  He constantly amazes me!  What a happy day!

Soft taco at last...

(He was dressed as a real baseball player equip with cleats and sun reflector black paint stuff under his eyes.)

Friday, August 10, 2012

doose syndrome research project

A few months ago, we learned of an opportunity to participate in a research study for Doose syndrome through the Manton Center for Orphan Disease Research a part of Boston Children's Hospital.  There are many families participating and the goal is to identify a common gene (or any commonality for that matter) amongst those with Doose syndrome.

We may never identify anything in particular about Ben or his DNA. But we are hopeful that one day in the future, the doctors will be able to discover causes and treatment options so that we can stop the seizures for anyone affected by Doose.

All three of us participated in this simple blood draw.  Ben LOVED getting to see us get poked for a change.  He offered to hold Leeon's hand and reassured him that it would be OK. 

We are in this together!

Tuesday, August 7, 2012

my focus for this month...

That is how we say this special verse with Ben every night before bed...

Back in August 2011, we had just received the Doose diagnosis and the reality that we were facing a giant was hitting us hard.

We sat together in church listening to our pastor's sermon.  I do not remember what he was talking about except that he was preaching out of Deuteronomy.  Leeon's eyes fell to the adjacent page and found this scripture.  He quietly pointed it out to me and as soon as I read it, my heart leapt within me.

I'm sure that theologians would have issue with my exegesis of this particular scripture, but to this mama's heart it was like a healing balm on a wounded spirit.

It says, "rest secure in Him". 

When the nocturnal tonic clonics were in full force, rest evaded all of us.  Leeon and I would take shifts sleeping next to him in bed.  It seemed that some nights as soon as we all got settled, a seizure would happen, and instantly we would be thrown into panic mode.  The lights would be turned on, we would yell for each other, scramble for the timer, and then watch and wait to see what the next few minutes would bring...

How long is it lasting?  Do we administer diastat? When did he have diastat last? Are his lips blue?  Why isn't it stopping?  This one seems longer.  Do we call 911?  Should we call the on-call neuro?  What do we do?  Ok, I think it's stopping....

Despite our lack of physical sleep, God was promising true REST to our little guy.

I also loved how this scripture said, "He shields him all day long." 

When the drop seizures were around, I wanted to wrap him in a bubble so that the falls would not cause injury.  We couldn't let him out of our sight for even a moment.  And yet God was promising to be his shield. 

I chose this scripture as my focus for the month because somehow my little baby is ready for kindergarten! 


My little 6 pound bundle of joy....

has turned into a
baseball loving,
drum playing,
lawn mower & vacuum cleaner obsessing,
five year old
who has stolen our hearts...

I'd be lying if I didn't tell you that there is a little uneasiness in the thought of him going to school.  Even though I have the privilege of being right across the hall from him, I still have all of the normal mommy worries...

I worry that he'll grow up too fast. 
That reading will be hard for him.
That he won't be able to sit still.
That he will be a follower instead of a leader.
That his heart will get hurt.

It makes me want to wrap him in a bubble...sound familiar?

But instead I need to focus on this scripture.  It says, "He shields him all day long."  God will be there to shield him.  His love for Ben far outweighs mine (that is so hard to comprehend).  His plans for Ben are better than anything I could come up I need to trust Him.  I need to see Ben resting on His Heavenly Father's shoulders...enjoying the view and being completely cared for.

This month...we are thanking God:
  1. for 7 months without a seizure
  2. 9 months of successful diet therapy
  3. the blessing of working at a wonderful school and getting to take Ben with me!
  4. that we can rest secure in Him knowing that He is our shield

We are continuing to pray:
  1. that this will be Ben's forever miracle
  2. for two other Doose families who have seen seizures return after a very long reprieve (J's family and H's family)
  3. that Ben will transition well to school - that he will eat at school in the allotted time; that his energy level will be high enough to stay engaged
  4. that the insomnia will lessen as he starts school

Thank you for praying!

Wednesday, August 1, 2012

doing the impossible

As we approach the beginning of the school year, I was becoming increasingly concerned about how to balance everything. 

I didn't know how I would survive the demands of the first few weeks of school and manage to get Ben's meals prepared. 

So I started dreaming...I thought if I cook lots of meals now, then maybe I can get a three week reprieve from cooking.  It wouldn't take all of the work out - there are still portions of the meals that have to be prepared at the time of consumption, but it would make a HUGE difference.

So I made a list.
I formulated a plan.
And then I was blessed with help!

My mom and my best friend, Angie helped me reach my goal and actually go beyond it! 

My freezer now holds...
32 pancake meals,
20 pizzas,
21 donuts, and
35 pieces of bread for his peanut butter sandwhich.

I couldn't believe it and I still can't!  I feel so very blessed to have such support!

St. Francis of Assisi once said,
"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible."

What an empowering day it was - doing the impossible!