Thursday, June 28, 2012

saving the best for last

Lately with his tortilla chips meal, he wants a few pieces of soft tortilla (not baked and soaked with oil). 

{We no longer give him coconut oil in the syringe due to severe tummy cramping, this picture was taken a week or so ago.  We just add more oil to the tortilla chips.}

So, you can see here that I set aside two pieces for him.

Later on, I checked his plate and saw this...

He was trying to save the best bite for last so there is the tiniest nibble of soft tortilla leftover.

Saving the best for last...

Monday, June 25, 2012

Strawberry Yogurt {keto style}

I tried another recipe - strawberry yogurt.

Here are the ingredients:

57 g brown cow, plain, cream top
22 g cream
9 g canola oil
24 g strawberry (or other 10% fruit)

I found the yogurt at Central Market, but was happy to see it here locally just the other day.  Unfortunately, it was NOT a hit with Ben.  With all of the added cream and oil, it had a slimy, filmy aftertaste.  I added a packet of truvia and it tasted better, but he still gagged when I made him try it again.

If he were to eat all of this, it still does not have enough fat so he'd have to eat 10 g of macadamia nuts and drink 30 g of cream to get to the correct ratio.  Since drinking cream is not his favorite, I'm not sure I'll be in a hurry to try this again - unless he asks for it.

Friday, June 22, 2012

the thief of joy...


God is teaching me so many things on this journey.

It's easy to get caught in the trap of comparison (especially while looking on pinterest).  :)

The other day, I discovered another blog of mom helping her child beat epilepsy one bite at a time with the ketogenic diet.

My google search brought me to this post.

What a challenging thought! 
I risk losing my joy not only when I compare my life to others, but when I compare my life to what I hope it will be in the future. 

Just like this mom, I remember thinking, "If only we could get these seizures to stop, then life would be better."

And it is!!!!  I do not take this miracle lightly at all.  All I have to do is go back and look at the seizure journal or read old blog posts, look at old pictures or videos and I can't stop thanking God for His intervention on our little guy. 

Every day I am so thankful for the simple blessing of getting through a meal without watching Ben hit his face on the table.  My heart sings when I hear him keeping a beat on his drum set or watch him hit a baseball.  I'm thrilled that I can push him on the swings and not worry that a seizure will cause him to fall off mid-swing!

But it's easy to fall into the trap of comparison again.

I find myself thinking, "If only he could get off this diet, then life will be easier.  If only we could wean the drugs, then..." 

And it's true. 
The diet is hard - every meal is a battle of sorts. 

It's hard to find the balance between being a firm parent requiring him to follow directions and eat his meal (because he HAS to) and yet being understanding to the fact that it is frustrating and difficult for him. 

The other night I learned that too much coconut oil causes severe cramping.  Ben had a very upset tummy the last time I gave it to him and couldn't sleep because of it. When I realized that it was because of the coconut oil in the syringe, I felt horrible.  I quickly became overwhelmed with how frustrating this diet can be, how I feel like I'm failing him miserably when I can't find a meal that he enjoys.  I had to work hard not to let the negativity consume me. 

So, I'm learning that I have to be careful not to miss out on the joy that is to be discovered right now because I'm so focused on how much better life will be when this challenge is over. 

I'm thankful for last night when Ben went out of his way to tell me how yummy his food was (despite the fact that it wasn't his favorite) because he knew I had been upset.  I think it was his attempt to reassure me that I'm not in this alone - that we are going to get through this together.

And most importantly, I have a Father in heaven who is helping me every step of the way and even better,  He has provided a way for all of us to spend a eternity with Him - never experiencing anymore struggles.  How amazing! 

Therefore, since we have been declared righteous by faith, we have peace with God through our Lord Jesus Christ, through whom we have also obtained access by faith into this grace in which we stand...

Not only this, but we also rejoice in sufferings,
knowing that suffering produces endurance,
and endurance, character,
and character, hope.

And hope does not disappoint...

(Romans 5:1-5)

This has become a very long post...
I'm not even sure all of what I'm trying to say...
I'm writing this mostly as a reminder to myself, but maybe you are struggling to find joy in your daily battle as well. 
Let's remember His love, His mercy and grace, and that He is an ever present help in our time of need... 

And maybe He's making something beautiful out of this dusty, difficult situation...                                       

Thursday, June 21, 2012

macaroni & cheese {keto style}

My friend, Angie has been encouraging me to try spaghetti squash and I finally remembered to pick one up from the store. 

I added A LOT of butter and a few grams of cheese and called it 'macaroni and cheese'!

I started with a small amount to see if he would like it.  He LOVED it!  Because I made such a small amount, he was allowed 'seconds' - a rare opportunity on the keto diet.


Tuesday, June 19, 2012

blood work update

We heard from the doctor today and Ben's bloodwork looks great! 

We are now able to switch to getting his blood drawn every 3 months.  We started with every other week, moved to monthly, and now it'll be september before we have to go see Ms. Rosie again! 

Praise God for another great report!


Monday, June 18, 2012

neuro & dietitian appointment

We went to the 'keto clinic' today!  We had a chance to meet with our neurologist as well as the dietitian.  It's so much easier to make a trip to the hospital when things are going well.  They are constantly making improvements at the hospital and it's just gorgeous.  They really make it a fun place for kids.

"Look mom, I got a strike!"

After a few minutes of discussion, we all agreed that we wanted to wait a little bit longer before we made any changes to his medicines and the diet.  The doctor said that it seems we have found our magic combination but at the same time it could just be the last drug, felbatol, that is doing it all.  The only way to know what's working is to start messing with things.  And none of us, the doctor included, are quite ready for that.

Our next appointment will be in September and we all agreed that with the start of school, that wouldn't be the best time to change anything either.  So it looks as if we will wait until December before we start to wean a drug.

Our doctor said that he would like to have another EEG as well before we make any decisions.  He said that there is a chance that his EEG could come back normal.  My heart jumped within me when I heard this news.  If it doesn't come back normal, we can still wean.  And just because it comes back normal doesn't mean that he won't ever have another seizure.  But it would give us a little assurance that we are headed in the right direction. 

Our dietitian added a few products to the database so I can start to make some new recipes.  I'm hopeful that Carbquick and Julian breads will make an appearance soon.

We asked her about letting Ben have sugar free gum.  It has 2 carbs in it, but she thought it would be OK to give him 1/2 of a piece since the carbs come from sugar alcohols and is metabolized differently.  She was going to get some clarification on it, but gave us a tentative go ahead on it.  Ben heard this and shot me the most adorable look ever!  He was thrilled to get to chew gum again!  I think he had forgotten what to do with it, because he kept asking, "What do I do with it mom?"  We had to remind him to just chew and then throw it away when he was done.  He loved it!

However, tonight we noticed a significant drop in his ketones.  :(  The only thing that was different today was the gum.  It was heartbreaking to have to tell him that gum is off his list again.  But he took it in stride.  I was so hopeful about this because chewing gum does help stave off mild hunger.  It would also help with his "keto breath".  And it really does make you feel like a regular kid. 

I've always said that I don't want to wean this diet until we are weaning it forever and this gum experience strengthens our resolve.  We should have waited for more direction.  We were just thrilled to experience normalcy.

A positive about today was that we got his blood work taken at the hospital.  That meant that he didn't get his morning meds for a very long time.  It was hours after he normally takes them.  {Thankfully there were no seizures either!}  But, he had us in hysterics this morning.  He was animated and talkative and just so happy.  It makes me long for the days that he will not have all these drugs in him.
"Come on and buzz already!"

Things we are thankful for:
  • no seizures - just pulling back into area of the hospital brings back so many memories...I'm so thankful.
  • an understanding doctor and dietitian - we really feel they have Ben's best interest at hand
  • his leapster - it helps with his sleepless nights
  • new meal ideas and his willingness to try them (although sometimes with a bit more prodding than others)  :)
Things we are still praying for:
  • tummy troubles - he complains of it hurting a lot at night
  • continued seizure freedom and a normal EEG by the end of the year
  • blood work results to continue to look good
  • renewed strength for Ben to keep going - even though sometimes it's just hard.
Thank you for praying for our little guy. 

Sunday, June 17, 2012

cupcake {keto style}

This cupcake is very yummy!  It tastes a lot like a regular cupcake which is great for Ben.  We used this recipe for his birthday as well as when he's gone to birthday parties.  It's great to have something special for him to participate as well.

The ingredients are:
4.2 g of coconut flour
.2 g of baking powder
1.5 truvia
16 g egg whites, stiff peaks
5 g european butter
10.4 walnut oil

Preheat oven to 350. Fold the oil, melted butter, coconut flour, truvia, baking powder and vanilla into the egg whites. Pour the batter into a silicone cupcake and bake for 15 minutes.

I tried this recipe in the donut maker since it's much sweeter and more desert like than the other recipe.

They came out pretty good - very delicate, but sweet.  Ben only took one bite and actually preferred the other recipe over this one. 

Thursday, June 14, 2012

medicine & vitamins

We have a love/hate relationship with Ben's meds.  We are so thankful for them - without them he'd  still be having multiple seizures a day.  But the side effects are unwanted...

Here's a look at what he takes everyday. 

He's really good at taking them, but he also loves to stall the process.  It's amazing what he can find to delay this daily act.  :)

Tuesday, June 12, 2012

corn dogs {keto style}

I saw this recipe and couldn't wait to try it!  I knew I would have to change it because the ratio was much too low for Ben.  But I thought it might be worth a try.

Here are the ingredients:

Whip 17 g of cream and 13 g of egg together well.  Add:
 .6 g of baking powder
.7 g of truvia
11 g of almond flour
.2 g of salt

Chop 20 g of a hotdog into tiny pieces. 

Layer the batter and hotdog pieces into the muffin tin.  (I think this recipe was designed to use a corn dog machine, but I just used a muffin pan instead.)

It was a HUGE hit!  Ben loved it!  He asked for more for dinner, but I told him he'd have to wait until tomorrow so that we don't overdo it. 

This meal isn't a complete 3.5:1 ratio, so I added 8 g of macadamia nuts, 20 g of cream, and 5 g of coconut oil. 

I was thrilled because tonight I melted the coconut oil and just used a syringe to have him take it.  I've seen others do that, but I've never tried it before.  Surprisingly, he did just fine!  I tried it with another meal tonight and it was kinda funny to see him get mentally prepared to take it.  He had to take a sip of his drink, stretch his arms, wiggle around, and then he was ready to take the syringe followed by a really big drink to wash it down.  :)  But he did it without complaint.

I've learned that 5 grams of coconut oil is equal to about 20 grams of heavy whipping cream.  It's definately a 'pick your poison' type of situation, but the coconut oil is so much faster (and less in calories).

It's amazing how every day I learn something more about this diet.  It's a constant pursuit to find something that he will like.  I kept dreaming last night that Ben was starving.  He was crying and crying for food, but I couldn't feed him.  It was awful.  But it makes finding a recipe like corn dogs an even better victory.  Ben loved it and I felt so good!

I'm thanking God for His guidance and wisdom and for others who are willing to share their ideas.  I'm also thanking God for my fearless little guy who keeps trying.  I tell him all the time that he is good at doing really hard things.  He amazes me every day.

Sunday, June 10, 2012

Donuts {keto style}

I saw this recipe on the ketocook website and I knew I had to try it!  After all, who doesn't love a good donut? 

Here's the recipe:
42 g raw egg, mixed well
19 g macadamia nut, ground into butter
10 g coconut oil, melted
a few drops of liquid sweetner
a sprinkle of cinnamon

Mix all ingredients and pour into the mini donut maker.

Each donut has about 40 calories and is at a complete ratio.  These are a perfect snack or he could eat more and make a meal of it.  Ben liked them a lot - I think because they taste almost exactly like his beloved pancakes.  To me, it tasted like eating the egg portion only of a breakfast sandwhich.  It had the texture of cooked eggs and that was the only flavor I could really detect.

But we can add one more thing to our reperotoire of meal ideas!  I'm thinking this would be a perfect meal for lunch.  It's portable and he'd probably be the only kid who gets to eat donuts for lunch!  :)

Friday, June 8, 2012

Candy {keto style}

Rebekka, another Doose mom, suggested we try to make candy as a way to get the fat into Ben's meals without having to drink so much cream.  I loved this idea and couldn't wait to try it out.

I melted coconut oil and poured it into candy molds.  I added a few drops of liquid sweetner to half of them and added natural carmel flavoring to the other half.  Then popped them in the freezer for a few minutes.

Here's what they looked like:

You can tell that the ones on the left have the carmel flavor.  I purchased the water soluble and it just wouldn't mix in with the coconut oil.  Bickford flavors does have oil soluble so I may need to order some of it to see if it would mix in better.

Ben wasn't very impressed.  It didn't really taste like much of anything - just coconut really and the texture is slimy.

I'm hoping that he will warm up to it.  I wonder if I presented the large cup of cream or 5 of these pieces of 'candy' if he'd be more inclined to give the candy a try.  I'll try again...I think I've heard that the average kid has to be exposed to a new food 10-15 times before they will even try it!  If that's the case, then maybe I need to pop one on his plate for every meal and if he eats it, then I can recalculate the carb/protein portion of his meal. 

Friday, June 1, 2012

my focus for this month...

It's June! 

In just a few days we will celebrate 5 months of seizure freedom!!!!!

I heard from his neurologist today and his white blood cell count is actually back up into the normal range!  That's the highest it has been since January.  His depakote level is also high which means his body is absorbing a good deal of this medicine despite the interactions with the diet. 

We will go see the neurologist and the dietitian in a few weeks.  This upcoming appointment brings me to my focus for this month...wisdom and direction.

We need wisdom to know what to do in regards to medication weans.  I hate that he has to take so many meds.  There are unwanted side effects for sure.  But we are willing to tolerate it because freedom from seizures is amazing.  The goal of the diet is to be able to wean all meds if possible. 

I know the doctor will talk to us about options.  I love that he includes us in the decision making process, but at the same time I don't know which medicine is working.  I don't know which one to pick to wean first.  I don't even know if it's time to start weaning.  We need wisdom.

I'm thankful that although we don't have the answers, there is One who does.  We will lean on Him and believe that as we seek direction, He will help us know what to do.  Or what not to do...

We also need help with meal ideas.  He's been content with eating pancakes for breakfast, pizza for lunch, and tortilla chips for dinner.  But last night he refused the tortilla chips.  I was able to give him about 1/2 of a tortilla with butter, about two spoonfuls of 'taco meat' with oil, and a very large amount of the heavy whipping cream.  The meals with large amounts of cream are challenging.  I need insight and creativity and wisdom...

He has promised to show us great and mighty things as we call on Him.