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. 

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!!!!!!!!!!!!!!!!!!!!!!!!

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 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!