Monday, December 31, 2012

so long 2012...

So long 2012 and so long mid-day meds!!!!

We got to downsize from this container:
to this one:

He took his last dose of mid day clobazam (onfi) this afternoon!  yipee!!!

I've been looking through the notes we've left in our Blessings Jar for 2012 and I'm overwhelmed at His faithfulness.  We are blessed abundantly!

Our pastor's message on Sunday was wonderful.  We have no idea what 2013 will bring, but we can rest assured knowing that the plans He has for us are for our good.  2012 hasn't been easy, but each day it's gotten easier.  I'm excited to see what 2013 will bring for us. 

 
(source)
Happy New Year!

Sunday, December 23, 2012

Christmastime is here...

 
"Nevertheless, there will be no more gloom for those who were in despair...
for unto us a child is born, unto us a child is given...
and He will be called
Wonderful Counselor,
Mighty God,
Everlasting Father, and
Prince of Peace."
Isaiah 9:1&6
 
The message of Christmas remains the same no matter what circumstance I find myself in.  Last year was overwhelming to say the least, but even in the midst of our despair, the meaning of Christmas prevailed.   
 
His birth changed everything.  His birth was part of God's plan to eliminate the gloom in our desperate situations.
 
I posted this same video last year and it's still just as powerful. 
 


Not only did He provide for our future - our eternal resting place, but He provided for our present needs as well.

This past year, He has been our Wonderful Counselor as we sorted through options, decisions, and opinions of what Ben needed.

He has been our great physician - our Mighty God - healing Ben with each medicine and bite of food on the ketogenic diet.

He has been our Everlasting Father - he knows our needs before we do and has never once abandoned us.

He has been the Prince of Peace in our home, our minds, and our hearts.

There is so much tragedy around us.  Things that have made national news as well as those that are tragic to only your family, friends, or community.  I wish I had grand explanations and eloquent words to explain pain and suffering.

But I don't.

All I know is that one day...
"there will be no more gloom for those who were in despair"...
and it's all because God sent His one and only Son so that whoever will believe in Him will not perish, but will have everlasting life.

Hope was born.

Have a very wonderful Christmas. 
Love to you all,
Laurie, Leeon, & Ben

Monday, December 17, 2012

EEG results

normal. 

normal. normal. normal!!!!!!!!!!!!!!!!!!!!!!!!

The doctor said, "It looks great!  The change is dramatic!  There were a few things that are consistent with the meds he's taking, but I would consider this EEG to be normal."

We were cautiously optimistic that we could hear those exact words and left elated to think how far we've come this past year.


I don't know what it all means.  We didn't ask a lot of long term questions.  We didn't even ask for some explanation of what it all means. 

We focused instead on the next step.  The next step is to wean clobazam (or onfi as it is named here in the United States).  We will start with his afternoon dose.  This means that after this week, he will no longer need to take any meds at school.  :)  It'll be a slow wean - it'll take about 10 weeks before he will take his very last dose of this med. 

We are thrilled! 

Because he's doing so well, we don't have to go back to the keto clinic for 6 whole months!  This may have even been his last EEG ever - I have no idea.  But it's exciting to think about.  He was nervous about it, but we had all forgotten how easy these short EEG tests are - they don't involve that high powered cement like glue and air gun of the longer tests...just medical tape. 

As for the diet, we are holding steady.  We will increase his school snack from 50 calories to 100 calories as he has dropped a little weight. 

We told Ben that he gets more food and less medicine - a great day for a keto kid!

I feel so emotional.  Last night we watched Ben sing on stage at church in his first Christmas performance.  Last year, on Christmas day, he had two seizures during the service at church.  Watching him stand up there - without a helmet, without a seizure - I can't explain the joy.  We are so grateful.  Overwhelmed actually.  It feels like we are moving forward, moving away from those dark days.  We are beating this thing!

All thanks be to God our Father!

Friday, December 7, 2012

my focus for this month {anticipation}

Anticipation - the excitement of this time of year is wonderful!

We are reading our favorite children's Bible each night to help prepare and focus our hearts on the true meaning of Christmas.  This Bible is a must have for kids - and adults too!  I love how it makes a direct connection to how Jesus is our rescuer at the end of each story.  It's beautifully written.

We are anticipating a lot this Christmas...family/friend get togethers...opening presents...looking at Christmas lights...singing Christmas carols...participating in the Polar Express Day at school...making Christmas cookies...visiting the local live Nativity...and the list goes on...

{all without a seizure this year!}




We are also anticipating another EEG. On December 17th, Ben will have an EEG again. We will keep him up until 11:00 p.m. the night before and have to wake him at 4:00 a.m. on that Monday morning. We are anticipating great news! We are hopeful that the success we are seeing (absolutely no seizures!) can be confirmed through this test.  We are anticipating taking another step in medication weans as well. 

I can't wait to see all that this month will bring! 



Wednesday, November 28, 2012

rolls {keto style}

I've wanted to try making these rolls for a while now, but haven't had time.  Thanksgiving kinda pushed me in that direction since I knew we would be eating rolls and Ben loves rolls.

I made both the high fiber rolls and the coconut flour rolls at the same time so I could do a side by side comparison.

They both include psylium husks which promote regularity.  Apparently, there is a recommended amount that kids can have of this per day so I was a little leery of using it, but it ended up being fine.



Ben kept calling the high fiber rolls, the chocolate ones because they were so dark.  :) 


The coconut flour rolls were much bigger.  It was surprising because it called for 100 grams of olive oil and I thought it must be a typo because that is ALOT of oil.  But the psylium husks and flour soaked it all in! 

The coconut flour ones definitely won out in our family taste test, but they were incredibly dry.  I brought one along for our Thanksgiving dinner and Ben picked at it a bit, but never really ate it entirely. 

It's nice to know that this option is available to us when he really wants a roll.

Monday, November 26, 2012

'sugar' cookies {keto style}

These cookies made a BIG difference in our Thanksgiving celebrating.  Mine did not look as great as Dawn's over at ketocook, but they were yummy!



The 'sprinkles' were so easy to make!  I just added one drop of food coloring to 2 tablespoons of truvia, mixed with a small whisk and then shook inside the container until all the little clumps were removed. 


I had a hard time figuring out the math behind adding the frosting to the cookies. The cookies were only a 2.5:1 ratio, but by adding the frosting they were a 3:1. I just had to figure out exactly how much frosting to put on each cookie as well as how many calories were in each. I forgot to weigh the dough before I started cutting the cookies. But I think I got it right, I'm not overly confident. My frosting was a little runny too, so I'm not sure how that plays into the exact fat content. In short, these are special occasion cookies. If they were to become a daily habit, I think my math would have to be a bit more precise. We never saw a decrease in ketones so I think it was pretty close.

{on a side note, we haven't seen a decrease in ketones since lowering his ratio a few weeks ago. I think this means that his body has become accustomed to making ketones. I think this means that in theory as time continues, we could lower his ratio even more and still reap the benefits of a higher ratio. Only time will tell, but a lower ratio is wonderful - we just want to wean meds first.}

I'm so excited that he will get to have this wonderful treat at his class Polar Express Party coming in December.  What a treat that will be to have cookies just like everyone else! 

Sunday, November 25, 2012

and then there were three...

medications - that is!

We have succesfully weaned Ben from clonazapam.  We can definately tell a difference in his level of alertness and others have noticed it too.

Check out this picture - look at his eyes!  They are so alert and don't have that drug hazed, half mast look that has become his norm over this past year.  I remember asking the doctor if his eyes would ever return to normal and he said there was a chance.  This picture gives me hope that they most certainly will!



We are so thankful for this postive outcome of the drug wean.  We look forward to even better news on December 17th when he goes in for the EEG.  I can't wait to discuss which drug to tackle next. 

We are beating this thing!

Thursday, November 22, 2012

{thankful}

 

(source)

My heart is overwhelmed with gratitude this morning.  My list of thankful thoughts seems endless. 

But I remember what its like to face Thanksgiving in the midst of a crisis.  This day can seem almost surreal when you feel like you are drowning in fear or desperation or fatigue.  If you are in the midst of a crisis today, hang on.  Reflecting on even the smallest blessing will increase your faith.  When your faith is big...everything else seems small.

I found these resources this week that I want to pass along...

I heard a portion of this sermon series from Charles Stanley.  It is entitled It is Good Thanks to God.  This three part series is both challenging and encouraging.

Here is a challenging post regarding thankfulness from one of my favorite bloggers.  I think I held my breathe through the entire thing - there is so much that I can relate to.   (I have lots to learn in the area of thankfulness.) 

I hope you have a wonderful Thanksgiving today. 


Saturday, November 17, 2012

it's a love/hate kinda thing

I'm trying to figure out some Thanksgiving meal ideas for Ben and I'm watching him eat a itty bitty teeny tiny amount of beans for dinner.

I've given him a 1/4 tsp measuring spoon to help him make it last a bit longer...but it breaks my heart to see him try to eat this beloved food.  He works to get every single tiny bit.  He begs for more.

Some days I wish I never re-introduced this food to him.  It's hard to understand that a tiny bit is better than none. 

We love and hate the ketogenic diet at the same time...

Wednesday, November 14, 2012

my focus for the month {perseverance}

November 14, 2011 was a day we met with great anticipation and also some dread as we entered the hospital to initiate the ketogenic dietYou can read about those early days here. 

When I think about that day, the word overwhelming is what comes to mind.
I remember thinking that there was no way we'd make it to the three month mark. 
I remember waking up in the morning and for a second I would be fine and then realizing that I had to feed Ben and it felt like a million pounds just fell on top of me. 

I never dreamed that we'd make it through 365 days of this diet. 
It didn't seem possible that Ben would be seizure free and beating this beast. 

But here we are.  We are making it.  We are surviving and life is returning to normal in many ways.  The impossible is becoming the possible. 

My focus this month is perseverance.  Because of His great love and new mercies every day of this past year, we are making it. 

God doesn't waste adversity.  Every moment of heart ache is serving a purpose and I can choose to find joy in the midst of trials because He is working.  He is developing character and instilling hope in me.  He has given us His Holy Spirit to remind us of His love and faithfulness.  We are never alone.


I still have so much to learn...
there are many other areas of my life where I need to apply this same perseverant attitude...
but I'm so thankful that He has never left us - not for a moment.



Sunday, November 11, 2012

improvements :)

We just started our last decrease in clonazapam.  In 2 weeks, we will be completely done with one of the meds!!!

Ben had a fantastic week at school! 

I'm thrilled to report that...
  • he didn't take an extra nap at school for the whole week! 
  • He ate his entire lunch in the given time slot a few days. 
  • He didn't ask to sleep on the way to school. 
  • He didn't fall asleep on the way home - we even played outside a few days after school! 
  • He begged us to take his training wheels off of his bike and is doing remarkably well with his attempts to balance a two wheeler.
  • He is eating all of his breakfast again and eats his bedtime snack again too.
  • He took shorter, more reasonable naps this weekend and has had a regular bed time as well. 
We are loving getting to see more and more of our little guy returning to us.  I know with each medication wean things will continue to improve.

We have a date set for his next EEG.  We go on December 17th and I just know that we are going to receive great news!

Thanks for continuing to pray with us.

Friday, November 9, 2012

turkey sandwich {keto style}


I have to thank my wonderful sister-in-law, Dana, for helping to create this meal.  She has a new part time job - balancing meals in the ketocalculator - anytime she wants!  :)  She compared balancing the meals to a game of sudoku on steroids.  Ha!

Anyway, we were trying to balance his peanut butter tortilla meal and ended up creating a turkey sandwich!  He has wanted one of these for quite some time now, so I was excited about it.  I've tried before but always had butter on the sandwich or the much dreaded mayo (or the even worse butter and mayo combo!). 

This meal is wonderful!  He gets a little less than 1/2 of a tortilla, about 1 1/2 slices of turkey breast, a little bit of cheese, a spoonful of butter/peanut butter mixture, some macadamia nuts, and 2 syringes of oil.  It feels normal.  It looks normal.  Sometimes I get so frustrated thinking back over the meals that we endured at the beginning of this diet.  This is such a simple meal and I don't understand why things like this weren't presented to us in the hospital.  I don't know...but I'm glad we have found a tiny bit of normal. 

Saturday, November 3, 2012

refried beans {finally}

 

Leeon's mom makes the most delicious homemade tortillas.  When you mix this with her homemade pinto beans, you have pure goodness.  Bean tacos were Ben's most favorite pre-keto meal. 

I wanted to introduce refried beans to him at the beginning of the diet, but I wasn't confident enough to try to formulate her recipe and the kind that come in the can have additives that aren't the keto friendliest.  I also knew that the kind in the can would taste different.  But the biggest reason I felt the need to hold off was the volume.  He was used to eating his fill and to now only get a tiny portion, I was concerned.

So, with the need to recalculate the meals, I thought I would readjust his taco meal to accommodate some beans.  We had a long talk about the changes that he would see.  I asked him if he would be ok with the fact that he only gets a tiny bit.  He couldn't wait to try them!

It was a great night in our house the other night when we finally got it all worked out.  He simply giggled while looking at the plate.  He couldn't even take a bite for the longest time because he was so excited!  But after they hit his lips, he couldn't stop thanking us and giving hi-fives.  I think he's told everyone he knows that "beans are on my list!"

Now I just need to figure out how to recreate her homemade ones for him.  :)
 

Thursday, October 25, 2012

clarification on the ratio change

We've gotten the official go-ahead to reduce his ratio. 

So here's a look at his new numbers...

Daily
- Fat 87.1
- Protein 20.24
- Carb 8.79 (he's been averaging about 11 carbs a day)

Per Meal
- Fat 29.03
- Protein 6.75
- Carb 2.93
 
We have reduced his calories from 400 calorie meals to 300 calorie meals, but this has been slowly coming for a while now.  It's been a long time since he's finished a 400 calorie meal in one setting.  So it's more like an official change than a realistic one. 
 
There is still so much I need to learn about this diet.  I remember sitting in the hospital and crying while the dietitian was trying to show me how to use the ketocalculator.  It was so overwhelming to me, we were so fatigued, so desperate for it to work and yet scared to death that it wouldn't...it was just too much.  When she was trying to show me how to get all 5 areas balanced (fat, protein, carb, calories, and ratio) I just cried.  She told me to take it slow and just focus on ratio and calories. 
 
Until now...it's like we are starting over again.  But in some ways it feels good.  I've listened to other moms talk about total carbs/protein and I've always wondered if we were doing it correctly.  Knowing that I'm balancing things correctly for his health and not just for seizure control give me confidence.  Lowering the ratio has given me a renewed sense of energy to keep trying new meals, but it can be a frustrating process to get the meals balanced correctly.  It seems as soon as I get one area next to perfect, another area has been messed up.  It reminds me a lot of trying to solve the rubix cube. 
 
So...off to fix recipes, I go!

Wednesday, October 24, 2012

a change in the diet

Ben was extremely fatigued after school yesterday and wasn't interested in eating at all.  We managed to get about 200 or so calories in him and then he went to bed.  He woke this morning complaining of a sore throat and refused his breakfast.  I decided to call the dietitian and the neurologist to talk to them about his blood work results and to see if this is common in kids on the diet.  We are tired of seeing him so run down constantly. 

His blood work looks good, but his protein level is too low.  So we need to balance his ratio so that he has more protein than carbs.

The dietitian has recommended that we lower his ratio.  She said that it's basically becoming a quality of life issue for him.  And we agree - he's really struggling with eating.   

After reading a bit tonight, I'm learning that the longer kids are on the diet their bodies become better at producing ketones.  Often, kids are able to reduce the ratio and yet still produce good ketones.  Considering we've been on the diet for almost 1 year already (I can't even believe it), it's time for an adjustment.

Currently, Ben is on a 3.5:1 ratio.  This means that he has 3 1/2 times as much fat as protein and carbs combined.  Our plan is to lower him to 3:1.  This means that he will get either less fat or more protein/carb in every meal. 

We also will lower his calories a tiny bit until his appetite returns more.  I just made two weeks worth of pancakes the other day, but lowered the calories to 300 because he was never finishing them. It was a waste of product as well as just too much food being presented at one sitting.

It's ironic how at the beginning of the diet, we would do everything we could to make it look like he had more food to eat.  We'd use tiny bowls, toothpicks instead of forks, and just spread things out to make it look like more....now we are doing the complete opposite.

I'm still overwhelmed with this diet.  I don't really feel like I understand it.  I need to talk to the dietitian tomorrow again because I'd like to have an exact amount of protein and carb intake for the day.  It seems that he gets about 11 carbs a day, but if we need to increase his protein then I'm not sure of the exact numbers.

Lowering the ratio means that I need to recalculate every meal.  I need to get the protein increased as well as the ratio and calories decreased.  It feels like a daunting task at the moment, but it will be so worth it!  I can't tell you how many times I've poured over the ketocalculator and wished that he was on a lower ratio.  We are headed in the right direction - weaning the ratio downward.  :)

We do have concerns though - we are making two changes at the same time.  We are in the middle of our clonazapam wean and now changing the diet.  But it really has come to a quality of life issue.  We need to get his stamina up, he needs to be able to eat.  We are hoping that this will help.

I just know that it's going to be fine.  I really have such a peace about where we are in this journey. 

A mom from the Doose support group posted this link about another boy struggling to control seizures.  It was speculated that he has Doose given the information presented.  Although it is comforting in ways to listen to others speak of their experiences that are similar to ours, it never gets easy to watch seizures happen and my heart grieves for those struggling.  Seizures are heartwrenching, horrible, and cause great desperation to do anything to make them stop.  The difference the diet is making in this little boys life is phenomenal - just like in Ben's life.  We are seeing Ben return to us and with each medication wean and each tweak to the diet, we are getting him back. 

This is another step in the right direction, I just know it!

Click on this link and scroll down to the bottom to watch the videos.  Warning, there are seizures in the video, but the information is good and it's phenomenal to see the difference.

http://foodhospital.channel4.com/cases/case-file-charlie/

Sunday, October 21, 2012

hope

Ben is recovering from the flu.  His cough is still very persistent and he is EXTREMELY fatigued.  He literally slept all day and night on Friday.  Yesterday he took two very long naps and was still in bed by 6:30.  He slept until 8:30 this morning, but still took a morning nap.

His fever reached 104.9 early Friday morning.  We instantly stripped him down and did everything we could to get his fever down.  It went down and hovered at about 102 for the remainder of the day. 

I was a bit worried about excessive ketosis on Friday.  His breathing was very shallow with short breathes and his fatigue level was off the charts.  But given that his lungs were not completely clear and that fever makes you tired - it could have just been because of the flu as well. 

After talking with the dietitian about his eating patterns and the symptoms I was seeing, she said we could offer him some sugar free jello.  I was able to open a container and offer it to him.  I didn't have to weigh it.  I didn't have to use the ketocalculator to formulate a way to balance the 1 gram of protein in the jello with some fat.  It was an amazing and scary feeling at the same time.  We have weighed every single bite of food for almost a year now. 

It gave me hope of days to come!

He doesn't really like jello, but I thought for sure he'd jump at it.  He enjoyed a few bites, but quickly fell asleep again.  As I was able to get him to eat more food on Saturday, the breathing pattern improved. 

I'm just so thankful he didn't have a seizure.  Anyone is susceptible to a seizure with high fever, but Ben is at an even greater risk.  So the fact that he didn't have a seizure is wonderful news! 

I can't help but just have HOPE that we are beating this thing.  If he can be sick for a month (off and on) each time with fever, then have a very high fever, and still not see any seizure activity...I just know we are beating this. 

I can't wait to see what the EEG will tell us in December. 

For I know the plans I have for you,” says the Lord, “plans to prosper you and not to harm you, plans to give you HOPE and a future. Jeremiah 29:11

Image of A Hope and a Future necklace

Thursday, October 18, 2012

you know it's a rough day when...

you wake up in the middle of the night with fever...

you have to go to the doctor - again...

the machine won't stop beeping because your oxygen level is low...

they make you stand in strange positions, perfectly still for chest x-rays...

you have to have a giant q-tip inserted in your nose for a flu test...

the lights go out at the doctor (it gets really dark in there!)...

you have to put a strange mask on your face that makes a really loud noise and somehow breath calmly...

the doctor tells you that you need to take more medicine...

you have to get blood drawn and because you've had fever and few liquids, it takes multiple pricks and lots of 'digging around' to find the vein...

But...if your name is Ben, you take it all in stride (except for the breathing treatment part...wow - that was beyond crazy, completely irrational fear, almost funny, but not).

The amazing part of all of this is that he hasn't had a seizure.  Not one.  He is so vulnerable right now, but he's holding on!  Thank you for your continued prayers for healing for him, for continued seizure control, and that Leeon and I won't get the flu!

Wednesday, October 17, 2012

what a difference a year makes...

2011...
we had already had 2 hospital stays and were dealing with constant seizures, med changes, and that dreadful helmet...


2012...
and now we are still seizure free!  no helmet!  we are getting rid of one med successfully and I know we are going to beat this thing!


As we find ourselves involved in some of our same traditions as last year, it is amazing to see just how far we have come.  It gives me great hope for what next year will look like.  We've got to just keep on going!

*********************
Please pray for Benny - it seems like he may be coming down with something again.  He had strep throat in the middle of September and then developed bronchitis at the beginning of October.  We thought he was on he upswing, but the fatigue and loss of appetite has returned again.  It seems that he just can't get over illness as easily as he used to.  Thank you for praying. 

Monday, October 15, 2012

ketocuisine bread

 

I saw this recipe on the ketocuisine website and was anxious to try it.  It has three simple ingredients and I was optimistic that because the ratio was so high (5:1), I would be able to add some turkey and finally give him the turkey sandwhich that he wants so badly.

It's very simple to make, just weigh the ingredients and mix together!


I was suppossed to use a mini loaf pan, but I don't have one, so I split the mixture and put it in these mini ranikin bowls. 


I was shocked when I opened the oven to see that they were giant!!!  As soon as I placed them on my stove and turned around for the camera, they had deflated a lot.



This is what they looked like out of the pans. 
 
 
I didn't have any turkey at the exact moment of making these, so I tried the peanut butter/butter mixure.  I think he prefers the peanut butter torilla meal more than this one.  I think the original intent of this recipe is to be used as a pizza crust.  I will have to try to use it as a pizza crust instead.  This bread has a very strong mayo flavor which isn't a favorite of his or mine, so we'll see.

Wednesday, October 10, 2012

ketocuisine cinnamon cake



Ketocuisine has posted more recipes and I've been busy giving them a try. 
 
I was excited to see the recipe for cinnamon cake pop up, because he loves cinnamon so much. 
 
The ingredients are ketocuisine, coconut flour, coconut oil, European butter, truvia, egg, baking powder, pure vanilla, and cinnamon.
 

Mix the ingredients together and bake.

Jump over to the ketocuisine website to see the finished product.  I never got a final picture. 

It is delicious, but unfortunately, Ben is not as thrilled as I am about this meal.  It is relatively easy to make and has a really sweet flavor.  I actually wonder if it's just too sweet for him since he never eats anything that sweet.  We keep it in the rotation though because it is a complete 3.5:1 ratio meal, he can eat as little or as much as he wants.  It is completely portable as well.  No need for refrigeration or heating.  I keep trying to tell him that he's the only kid who gets to eat cake for dinner!  :)

So, if your keto kid has a sweet tooth, this is a wonderful treat! 

Saturday, October 6, 2012

my focus for this month...

Today we are celebrating Ben's last seizure - 9 whole months ago.  wow!

We don't take this for granted - not for one second.  Last night, I felt Leeon literally leap out of the bed.  This alarmed me to my core and I chased after him.  He thought he heard Ben having a seizure.  Thankfully, he wasn't.  He was asleep - he had made his way to the couch in the middle of the night, but he was perfectly asleep.  And so we made our way back to bed, hearts beating out of our chests and thanking God for peaceful sleep.

We don't take this miracle for granted because others are still trying to gain seizure control.  A little guy on the support group has lost seizure control after 1 1/2 years.  The doctors are trying everything. Pray for H and his family as they are making big decisions.

Our little friend Ethan is still trying to find freedom. 

Epilepsy is cruel.

Because even when the seizures stop, there are still repercussions.  This month we have struggled with the adjustment to school.  It's hard to see your child struggle.  I think every parent can understand that statement.

I've blogged before about how comparison is the thief of joy and it is very true.  I've found myself comparing Ben to where he was and where I want him to be with where he is right now. 

It's just hard to see him struggle.  It's hard to know what to do to help. 

I was having a particulary rough week and my friend, Angie sent me this scripture from Zechariah 4:10.  This is my focus for the month...


God is working.

We were in the pediatricians office this week because Ben developed bronchitis.  I love our doctor, he is always so encouraging.  He told me about his cousin who was on numerous, high powered meds like Ben and then eventually got off of them.  He apparently has just finished up his PhD and he said that the kids who went to school with his cousin in junior high would most likely be surprised by his current accomplishments.

His point?  Don't give up. 
The present does not determine the future. 
Especially when God isn't finished working yet.

His faithfulness is never ending. 
I love that his mercies are new every morning. 
"All I have needed His hand has provided..."
"Strength for today and bright HOPE for tomorrow!"

Great is your faithfulness, oh God, my Father...



It may have been a rough week, but it's hard to feel too defeated for long around here - Ben has been singing, "Blessed be the name of the Lord...when the darkness closes in Lord, still I will sing!" on the top of his lungs for the past two days.
Bronchitis and all.

I have a lot to learn from his faith...

Saturday, September 29, 2012

cream cheese and butter tortilla {keto style}

Ben wanted cheese and pepperoni (that used to be a staple meal) a few weeks ago.  I reminded him that he would have to drink LOTS of heavy whipping cream with it and he quickly changed his mind.
 
I played around in the ketocalculator and came up with this meal using a cream cheese and butter mixture inside the tortilla.
 
We can add this to the failed meals for sure.  Although I love the taste of cream cheese, this guy wasn't impressed at all.  And it still involved a syringe full of oil, so although he got it all down, it won't make its way around again anytime soon.
 
But maybe if I add cinnamon to the cream cheese...hmmm.... 

 

Wednesday, September 26, 2012

the charlie foundation symposium

The Charlie Foundation is a wonderful organization that has helped shed light onto the benefits of the ketogenic diet.  They recently held a symposium in Chicago and although I would have LOVED to attend - it was simply impossible. 

Meryl Streep who played the influential role in the movie, First Do No Harm was honored at this years event. 

I've never watched this movie.  People talked to me about watching it when Ben was so bad off, but I could never bring myself to do it.  I was living the nightmare and the thought of watching it on TV was just too much for me to think about. 

I found this tonight- a tribute to Meryl Streep from this past weekend's event and it is powerful!  Listening to these moms and dads talk about their experience and watching the clips from the movie - wow.

It's hard to believe that we may have actually moved to the other side of such a dark place.  Ben is doing so good!  Watching the seizures on this clip make my heart literally stop.  I hope I never see another seizure for the rest of my life. 



I wish I could have gone...just hearing from other moms - I can't even explain what I'm feeling. 

So, thank you Meryl...thank you Abrahams family...thank you to the Charlie Foundation...thank you to all of the other moms and dads who continue to offer guidance and support to one another...

we are all beating epilepsy
one bite at a time.

Tuesday, September 25, 2012

peanut butter cookies {keto style}

I found a new recipe on the ketocuisine website. 
 
These peanut butter cookies were really good and easy to make.  
 
 




They are a little crumbly.  The ratio is 4:1 so I thought if I increased the egg, maybe they would hold together a little bit better. 

Ben ate them, but hasn't requested them again.  I think I will throw it into our rotation for sure since they were so easy to make and had a great flavor.

Sunday, September 23, 2012

bloodwork update

There are no concerns with Ben's blood work at this time!

His zinc level was normal and his lipids were within the normal range for someone on the ketogenic diet.

His white blood cell count is still low but looks to be trending up again.

This week at school was much better.  He ate his lunch everyday.  :)

He gives it his all at school, so he begs to go to sleep at around 6:30 or 7:00 every night.  Some nights have been better than others in regards to the insomnia.  We haven't tried the melatonin yet because I think I bought the wrong one and I'm afraid to try it without getting the OK from the dietitian.

Thank you for praying! 

We have successfully made it through week one of our first medication wean!

Monday, September 17, 2012

neuro visit

We had a great visit with our neurologist and dietitian!  We felt like we had their undivided attention and that they were actually all on the same page despite the fact that we meet with them at separate times. 

His blood work looked good.  White blood cell was low, but that was probably because of the illness and it tends to fluctuate each time we test it.

Depakote level has maintained.  We like it to be near 100, but it's holding steady at 85.  At Christmas, when things were at their absolute worst, his level was in the 20's or 30's.  So 85, is great!  It also means that we could increase his dosage if necessary.

Felbatol level is also not at its maximum.  This is good because it means we are maintaining seizure control without having to max out another drug.  If we needed to increase it, we could. 

We all agreed that clonazapam is the best one to wean first.  It is a benzodiazepine.  I'm not sure what it all means, but basically this class of drugs is less favored because of the side effects and the dangers involved in long term use.  Since clobazam is also a benzodiazepine, the doctor felt that we needed to try to eliminate one of those first.

Some of the side effects of clonazapm include drowsiness, problems with walking and coordination, dizziness, depression, fatigue, and problems with memory.  All four of his meds have similar side effects, but our hope is that they will be lessened as we decrease each med.

We are weaning slowly.  If all goes as planned, he will take his last dose of this med on November 25th. 

Then in December we will have a short (about 45 minute) EEG.  We've done these short ones numerous times before - since he was two.  It involves sleep deprivation, but no hospital stay.  :)   Then we will meet with the doctor immediately afterwards.  We are praying for no abnormal spikes.  If the EEG looks good, then we can consider weaning the other benzo drug, clobazam.  If it doesn't look good and he's still struggling, then we will look at making changes to the diet.

We talked about the insomnia, and he suggested that we try the melatonin when he wakes in the middle of the night.  He falls asleep just fine - in fact he begged to go to sleep already and he's out.  He typically begs to go to bed at about 7:00 each night, but then is wide awake a few hours later.  So hopefully, this will help.  But the health food store is overwhelming.  It's hard to understand the differences and then trying to find hidden carbs is a task of its own. 

Leeon is taking him tomorrow morning to get more blood work completed.  We are checking on his lipids, his white blood cell count again, his zinc level, and also a metabolic panel, as well as the level of acidosis in relation to the ketones. 

I'm thankful that we had God's peace throughout the entire visit.  We are blessed with excellent medical care.  We are all a little scared about this wean.  The doctor echoed our apprehension, but it's time. 

Our Pastor preached this Sunday on the greatness of God.  In Isaiah 66:1, it says, "This is what the LORD says: "Heaven is my throne, and the earth is my footstool. Where is the house you will build for me? Where will my resting place be?" 

Imagine how big God is - our giant earth is His footstool.  But yet, He cares deeply about my son and the fact that he is more tired than any 5 year old should ever be.  This song has blessed me in so many ways as I think of our great, big God holding the hand of my little son. 

As long as He's here,
we fear no evil,
the way is made straight,
there's good coming,
everything is changed. 

Thank you for lifting us up in prayer today.  Please continue to pray that we will see less fatigue, more stamina for school, and continued seizure freedom.

King of this World
You're holding my hand
And as long as I hold on to You
I know I can stand

Because You’re here
I fear no evil
Because You’re here
The way is made straight
Because You’re here
There’s good for Your people
Because You’re here
Everything’s changed


(Double click on the play button to listen to the song.)

Sunday, September 16, 2012

an empty plate

Ben requested pancakes this morning.

He ate every bite of them with little prodding!

I love the look of an empty plate.  :)

yippee!!!

Saturday, September 15, 2012

thankful

Tonight, I am so thankful...

  • for wonderful coworkers - they wore the Team Ben shirts on Friday to show love and support for our appointment on Monday
  • for incredible family - near and far - always checking in on Ben and helping in numerous ways
  • for friends who might as well be family - they always understand, always offer encouragement, and even think to send a card to brighten my day...love you!
  • for complete strangers who have only heard about Ben, but yet stop to inquire about him with genuine concern {this really blessed me today...it was a gentle reminder that if Benjamin has not been forgotten by those that don't know him personally, then our loving Heavenly Father has certainly not forgotten him either!}
  • for all the prayers that have been prayed
  • for all the hope that has been offered
  • for all the love that continues to bless us on a daily basis
Ben is still very tired.  He begged to go to bed last night at 6:00, but I managed to keep him up until about 7.  I had him sleep with me because of my own worries, and he slept ALL night!  It was wonderful for all of us.  :)  He took a long nap today, laid on me for most of the afternoon and evening and begged to go to sleep a little after 7 tonight.  I'm hoping he'll sleep all night again.

He was not interested in his beloved pancakes this morning at all. When I finally got him to take a bite, he gagged.  This concerns because I'm afraid that means he has reached his limit on this meal. He's eaten it every morning (and often begged for it at every meal) for months now. It's one of our 'go to' meals. It's a staple. I'm hoping if we take a break for a few days and offer him different things, maybe we won't lose it all together.  He did eventually eat two complete meals so that was good.

We've been on the diet long enough that it has become our 'normal' - our daily reality.   When we visited with a doctor for the strep throat visit (not his primary care doctor, but another one in the practice), I found it interesting that a few minutes after the initial evaluation she said, "I can smell the ketones on his breath, normally that is alarming as it means we have a pretty sick kiddo. I'm relieved to know there is a reason for it." I had forgotten the reason for the foul breath - it has just become part of our new normal.

We have been trying to determine what the cause for the fatigue, loss of appetite, and sleep problems could be.  It is very true that the meds can cause all of these.  But the diet could be the cause as well.  Being in ketosis decreases the appetite as well. Apparently, having too few carbs can interfere with sleep patterns.   Many children on the diet take a carnitine supplement because a deficiency in this area causes pretty significant fatigue as well.  But he's still trying to get over strep throat.  Because his body is working hard to fight infection, it could be that he just has little left to give.

Leeon and I need to make a list of questions for our neurologist.  We need to look back over the seizure journal and see if we can find a pattern to give us a clue as to which drug to possibly wean.  We could also discuss 'fine tuning' the diet by lowering his ratio, adding the carnitine supplement, or changing the amount of calories he gets at each meal (maybe changing to 4 smaller meals), etc. 

The bottom line is that we need to make a change, but it is imperative that we make one change at a time. 

Please pray that the neurologist and the dietitian will have supernatural wisdom as well as be in agreement (they are often coming from two different schools of thought).  Pray that they will have time in their schedules to really help us make confident decisions.

I'm sorry this post is so long...writing is sometimes therapeutic for me...

On a lighter note, we enjoyed my favorite movie together with friends tonight and it fits in perfectly with where we are right now in life.  The path ahead is dark and we can't see very well, but we need to 'just keep swimming' knowing that we are not alone.



Thursday, September 13, 2012

strep throat...

Ben ended up with fever at about 3:00 a.m. and this afternoon, the doctor said he has strep throat.

Maybe once we get some antibiotics in him, we'll see an improvement.

He has literally slept all day long. 

Thanks for praying for healing as well as continued guidance in decisions made on Monday. 

Wednesday, September 12, 2012

prayer requested...

Ben is having a more difficult week.

Would you pray specifically that...
  • his body would rest tonight - all night and that he would sleep soundly, deeply
  • he wouldn't have any headaches tomorrow
  • that his appetite would return - meal times are becoming very lengthy and a battle
  • that the fatigue during the school day would not be so challenging for him
  • that we would have wisdom
We are growing concerned because it appears as if a pattern is developing.  His level of ketones seems higher than ever and as the ketones increase, his level of fatigue also increases.  This seems to make it actually harder for him to sleep all night long, so the fatigue worsens.  Then because he's so tired, his appetite decreases.  The less food he eats, the higher his ketones become, and so the cycle continues.

I'm thankful that our neuro appointment is on Monday.  We are praying for wisdom for Dr. Perry and Jessica, our dietitian.  We got blood work done this morning, so I'm hoping that it will give us some clues as to what changes to make.

We were not planning on weaning any meds until December, but it's becoming apparent that we need to do something. 

But...the fear that threatens to grip my heart as I even type that is...too much.  We have no assurance as to what changes to make.  We have to just make an educated guess and try to remove the right portion of the Jenga tower that is seizure control.  We won't know if we've made a wrong move until the damage has been done.

Please pray for peace and wisdom for us as we trust in His guidance.

Thursday, September 6, 2012

my focus for this month....

Determination.


Epilepsy wanted to ruin this day for him...but it didn't.


We are determined to keep moving forward. 
Despite the daily challenges that still exist, we are determined to keep going. 
We are not giving up. 
We are not giving in to fears of the unknown. 
We are pressing on.  One.step.at.a.time.

I'm so proud of my little guy and so thankful for my our school.  Each day, he's adjusting a bit more; growing more confident; becoming more interested; and understanding how it all works.


We are praying that:
  • God will give us wisdom in any decisions made at our neurology appointment this month.
  • Ben's bloodwork will all return normal this month.
  • For continued endurance...he deals with large amounts of medications that cause some pretty severe fatigue, as well as place him in a 'fog'.  He has to fight hard to get past all of that to focus. (and focusing is hard enough for any active 5 year old boy!)
  • We have found his forever miracle...that the seizures will never return.  ever.
We are rejoicing that:
  • he hasn't had a seizure in 8 months.  we are soooo close to celebrating one whole year!!!!
  • some nights are better than others in regards to insomnia
  • he has not shared any food at school...I know that God is empowering him to avoid temptation
  • he's in a regular ed, all day, kindergarten class...the same can not be said for all "Doosies" and 8 months ago we weren't sure what the future held for him.

My scripture for this month is a bit long and the version is not traditional, but I love it.


I wrote about it months ago, on Christmas Eve, because it gave me great hope for the future.  And here we are 8 months later and I'm still filled with hope and renewed determination to keep moving forward.  I can't wait to see where we'll be in another 8 months. 
 
..."not a day goes by without His unfolding grace"...

Tuesday, September 4, 2012

peanut butter tortilla {keto style}

Ben wanted to eat a tortilla the other day without the taco meat.  I suggested we put peanut butter on it and it was a HUGE success!

He loved it! 

It is by far the simplest meal since it doesn't include the multi-step process involved in making the oopsie rolls for the peanut butter sandwhichs I mentioned earlier.  Since the diameter of the tortilla seems to be greater than the oopsie rolls, it helped keep most of the peanut butter mixture where it belonged instead of falling out onto his plate. 

I used the same butter/peanut butter combo, put some macadamia nuts on the side, and gave him only 1 syringe full of olive oil. 


I love days like these...

Sunday, September 2, 2012

granola cereal {keto style}

I was so excited to try this recipe with Ben! 

Jennifer, another keto mom sent me an email with some new recipes and I knew I had to try this one out. I tweaked it just a bit to find the correct ratio for Ben and came up with this:

13 g. crushed dry roasted almonds
18 g. crushed macadamia nuts
9 g. crushed pecans
12 g. unsweetened coconut flakes
3.5 g. truvia

50 g. almond breeze
5 g. water


I mixed together all the dry ingredients into a bowl.


Then I added the almond breeze and water and it looked like cereal! (The water is just there to help the almond breeze go a bit further, you can use that as needed).


I think this cereal is very good. The almond breeze tastes nearly identical to the flavor of 2% milk, but only has 40 calories! I was very hopeful for this meal idea...

When I told Ben he could have cereal, he was so excited and asked, "Is it fruit loops?" I told him no, but I then I showed him how I was eating granola cereal just like him (only mine came from a box). He was hesitant about trying something new.

He smelled it (as he always does now when approaching new foods) and said, "Hey! You put nuts in here!" He was less than thrilled about that since lately he hasn't appreciated the flavor of macadamia nuts as much as in the past.

Another issue he had with it was the 'milk'. We have tried to get him to drink the heavy whipping cream by adding water and a drop or so of liquid sweetener, but he has always hated it. We called it milk and forced it unsuccessfully each time. So, when I told him that he could have milk, his response was, "But mom, you know I don't like milk." His statement is ironic since before keto, his days were filled with sippy cup after sippy cup of milk.

I forced encouraged him to taste one bit and as expected, he said he didn't like it. I need to see if I can lower the amount of macadamia nuts as that was the most dominant flavor, but it's also the highest fat ratio ingredient. I think Jennifer adds oil, so maybe if I try that I can decrease the nuts.

I'm confused about the almond breeze. The label says that is has 3.5 grams of fat, 1 carb, 1 fiber, and 1 protein. Our dietitian allows us to use net carbs so that means that one serving is essentially carb free. So, in my mind this makes the product 3.5 grams of fat per every 1 gram of protein. (3.5:1) But when I tried to use it as a perfect fat source in a few snacks, I couldn't get it to balance correctly. I need to talk with our dietitian about it specifically.

But before I can use it too much, I need to get him to believe that he does like milk...so that he'll be willing to give it a chance again.

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.

Ingredients:
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 label...it 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 year...school 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 every.single.day.
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!

Ingredients:
.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.