Sunday, March 31, 2013

He is Risen!


Celebrate the good news!
Jesus is alive!
Because He is alive, we have hope...we have love...we have peace...

Isn't it amazing that He not only secured our future - eternal life in Him in Heaven, but that He also gives us the grace needed for everyday.  Not for a moment do we have to face things on our own. 

Have a wonderful Easter...

Tuesday, March 26, 2013

what a day!

I've been meaning to update the blog for a while now...

I meant to blog that today is Purple Day!  A day to show support for those battling with epilepsy and to raise awareness for the need for more research.

I meant to blog that we found two more meals that he loves!  Using the low carb tortillas, he has loved eating a cheese quesadilla and even a cheese pizza!  We have been in love with this new lower ratio (2.5:1)!  I've never seen him eat so much food!


But I have even better news to share!!

Last night, I tested his ketones.  (I haven't tested his urine ketones for about two weeks.)  There was no trace of ketones at all.  The stick didn't change at all.  We retested a few more times, used strips from different containers to double check.  And it was true - not a hint of ketones.

My heart instantly knew that this was good news...but I cautiously approached the situation with calmness.  I researched, talked with others, and eventually emailed our dietitian. 

So today, it has been confirmed....the diet is over.

The diet is over! 

We had no idea that it would be this soon, but Ben never follows things on schedule as it would seem.  :) 

This afternoon, he had a teeny, tiny taste of things not on his list.  He was absolutely giddy with excitement.

At dinner, he had tears in his eyes as he ate his fill of beans - without oil! 

None of us can stop smiling! 
It's been a wonderful day...

I keep thinking about this scripture...

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever. 2 Cor. 4:16-18

Not a day has gone by without His grace...
grace for the moments that felt too hard...
and yet here we are now and it feels like a lavish celebration already! 

We are so thankful for that grace, for no seizures, for no more diet, for family and friends that have been our biggest cheerleaders, and that one day {soon} we will be completely med free as well!

Saturday, March 23, 2013

keep calm, stroll on...

Stroll Shirt 2013
We didn't actually make it out to the stroll this year for a number of reasons (boo!) but we are there in spirit!  We'll be there next year! 
Click here to see a video that explains why we walk.
Click here to find out how you can support the epilepsy foundation's mission.

Tuesday, March 12, 2013

difficult decisions

Ben started vomiting again on Sunday night.  I hate seeing him like this.  We've been using zantac and miralax to treat his tummy issues but it doesn't seem to be helping.

While kneeling in front of the toilet, Ben looked up at me and said, "Can we tell the doctor that we hate this diet?"  And at that moment, it became extremely clear that it's time for a change.

And it is time for a change.  We are a few weeks removed from the clobazam wean and so it's time to either start weaning depakote or consider removing the diet. 

This has not been an easy decision process at all, but we've prayed about it, talked about it, consulted with others, and have come to the conclusion that it's time for the diet to end.  We need to wean the ketogenic diet. 

Here are some reasons:
  1. the vomiting and constant tummy pain
  2. he is growing taller, but continues to maintain his same weight - his growth chart curve has been affected
  3. his compliance has become increasingly difficult
  4. he gags on his pancakes and can not tolerate macadamia nuts
  5. we are running out of fat sources for him that he can keep down
We also have to look back at his history.  In December 2011, he hit his worst spot ever.  The seizures were relentless.  We took him to the hospital and discovered that his depakote level had bottomed out and we gave him depakote via IV to help bring it back up.  So we know that this drug has been effective before - though not on it's own.

It wasn't until we added felbatol that the seizures were controlled.  Adding felbatol was a desperate measure.  We had just started the diet and in hindsight we should have spent more time tweaking the diet before adding this med. 

But it worked.  We had seizure freedom.  And thankfully we have never seen one since. 

We of course know the dangers involved with depakote and felbatol.  It was our goal to med free before we were diet free.  It is still our goal to get him med free and I believe that will happen one day soon.  But it has come down to a quality of life issue.  Ben is not happy - he is obedient and does what we ask of him, but it has taken its toll on him physically and emotionally.  When I did a little birthday interview with him last week, I asked him, "What is something that is hard for you to do?"  His answer was, "eating with other kids." 

I know that there are those that will question our decision.  And trust me, we have questioned it ourselves.  We do believe that the diet has been effective, but because we had so many meds on board and then added one when starting the diet that we never really could say - YES! the diet has been our sole miracle.  I've seen it be the miracle for so many kids and I do believe it has been beneficial for Ben. 

We realize that he has not been on it for the recommended two years and no where near the ideal of being on the diet without drugs and seizure free for a length of time similar to that.  We know that other kids have been able to be on this diet for years and years and some even plan to be on it for a lifetime.  And we know of moms that have weighed and measured meals far more than can even be counted.  To those kids and their parents, wow - your strength and persistence should be praised. 

So, what does this mean? 
  • We have taken the initial step down.  We are not at a 2.5:1 ratio and will stay here for three weeks. 
  • Then on April 1st, we will step down to 2:1. 
  • Then on April 22, step down to 1.5:1. 
  • Then on May 13, we will do a "Atkins diet".  She said we wouldn't have to weigh or measure anymore.  I asked her how do I do that?  She said we will talk more when we get closer. 
  • Then on May 27th, Memorial Day, we will officially be diet free and as our dietitian said,  "we can take him out for ice cream".  :) 
That's the plan. 

I'm thrilled!
and scared.
and hopeful.
and optimistic.

And mostly filled with faith.  I just know that this ordeal is over for Ben.  I believe that with all of my heart that he is not going to ever have a seizure again.  Never.  And removing diet therapy is just the next step. 

So today is a good day. 
Tomorrow will mark month 16 of diet therapy. 
In 62 days, I can put the scale away. 
In 76 days, I can let him scoop out his own portion of food from the dinner table and let him eat the biggest bowl of his beloved beans from Nana.

Let the countdown begin!
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Friday, March 1, 2013

on this day 6 years ago...

Ben made us a family...and we are very blessed!

We prayed for him - we wanted him long before he came to us and yet God's plan and timing is perfect. 

Happy Birthday to my favorite 6 year old!

I've been singing this song all day...what a beautiful idea - the angels singing and dancing on the day Ben was born just marveling at God's beautiful workmanship. 

We are blessed and so very thankful for our little guy!