Tuesday, January 7, 2014

the day we've been waiting for

It's here - finally!
Ben has been seizure free for 2 years!
 
We've been waiting for this day since June of 2009.  Ben was only 2 years old when he had his first seizure.  It seems like that was so long ago.  And we have certainly lived a lot of life in the 4 1/2 years since the countdown began. 
 
I know the doctor warned us about celebrating prematurely.  He said that he can not consider Ben in remission quite yet because the Doose diagnosis changed everything.
 
But life is worth celebrating
 
We've been waiting for this moment too long to let it slip by without recognition. 
 
So we celebrated!
 


The significance of the day was definitely lost on Ben.  For that I am actually grateful.  I'm thrilled that this burden has become a faint memory for him.  I'm not sure it'll ever be that way for us. 

In June of 2009, I had no idea that we would have to wait this long for a celebration. 

And in early January of 2012 - I had no idea that the end was so close. 

The future is still a mystery. 


 
But we believe that it is the end of epilepsy for Ben.
We are trusting God that the seizures will not return. 
 
We have a HEALTHY child that will wean from his final med at some point (hopefully soon!) and remain seizure free - that's our hope.  We also pray for wisdom in parenting him and for continued progress academically.
 
But it's time to let go.
It's time to move on. 
 
It feels like this beast has been hovering over us for so long and I'm ready to start 2014 without it constantly being at the forefront of our minds. 
 
I battle with the fear of seizures returning daily.  If Ben is not with me and the phone rings, my mind instantly hears, "Ben just had a seizure".  It's my first thought.  If I hear him make a strange noise while sleeping, my heart falls to my stomach.  This nightmare has wrapped it's long, cold fingers through our hearts and minds and it's time to let it go.
 
In 2014, I want to focus on "The Lord says, 'Forget what happened before, and do not think about the past.  Look at the new thing I am going to do.  It is already happening. Don’t you see it?  I will make a road in the desert and rivers in the dry land.'"  (Isaiah 43:18-19)
 
As we left the celebration, Ben wanted to launch a balloon in the strong winds.  It didn't take long for that balloon to sail high into the sky.  It was a perfect way to describe how we are feeling. 
 
Let it go. 
Focus on the new things that God is doing in Ben's life. 
So long, seizures!
 

 
 Thank you for loving and supporting us throughout this ordeal.  We certainly never felt like we were carrying this burden alone.  We continuously thank God for restoring Ben's health and for giving us what seems like a second chance with him.
 
 
"About Benjamin, He said,
'Let the beloved of the Lord rest secure in Him
for He shields you all day long. 
And the one the Lord loves, rests on His shoulders.'" 
Deuteronomy 33:12



Tuesday, December 24, 2013

Christmas Eve

I have shared this video every year.  I apologize for the repetition, but Max Lucado's words are so powerful.

God interrupted time and humanity to provide eternal redemption for us and by doing so, Hope was born.

What a beautiful truth!

http://youtu.be/p0ICQSyoxVI

Merry Christmas!
Laurie, Leeon, and Benny

Saturday, December 7, 2013

snow day & another milestone

We are in the midst of an ice storm. 
I love when we get a taste of the winters that I remember as a kid,
although I am grateful that we don't have continuous low temperatures. 
I've become quite warm blooded apparently. 
 

 
23 months is a long time without a seizure and we are so thankful!
 
Today, Ben was telling me that he wasn't going to take his medicine anymore. 
I told him that we could talk with Dr. Perry about it again,
but that he is concerned that the seizures will come back. 
 
He said, "Mom, they are NOT coming back. 
I punched those seizures in the stomach and beat them up. 
So they are NOT coming back." 
 
We certainly hope and pray that it will be so!


Monday, December 2, 2013

O come, O come, Emmanuel

I love this song.
 
The world waits for a miracle
The heart longs for a little bit of hope
O come O come Emmanuel
A child prays for peace on earth
And She’s calling out from a sea of hurt
O come O come Emmanuel
And Can you hear the angels singing

Glory --- to the light of the world
Glory --- the light of the world is here

The drought breaks with the tears of a mother
A baby’s cry is the sound of love come down
Come down Emmanuel
He is the song for the suffering
He is Messiah, the prince of peace has come
He has come Emmanuel

For all who wait
For all who hunger
For all who’ve prayed
For all who wonder
Behold your King
Behold Messiah
Emmanuel, Emmanuel



Emmanuel means God with us
How amazing to think of God being with us. 
I love that Christmas is a time to really reflect on the hope we have in Him.

Can you believe that in a few days we will celebrate 23 months without a seizure? 

I'm thrilled beyond words, but my heart is also burdened for Ethan.  He is still having seizures.  They have been on the diet for more than two years and have added another medication to see if that will help.  They are quickly running out of options.  The severity and frequency of his seizures are certainly taking their toll on his little body.  Will you continue to pray for him and his family? 

God is with us.

Saturday, November 30, 2013

a heavy heart

My heart is heavy after learning about the passing of sweet Matilda
 
Although I have never met this family, I have followed their journey from an incorrect Doose diagnosis to the terrible diagnosis of Batten Disease. 
 
When Ben was tested for that disease, I thought my heart would crumble...I can't imagine walking that journey.
 
There are just no words...just prayer that peace will cover this family and that the hope of Heaven will sustain them.
 
*****

Wednesday, November 27, 2013

thankful

 
We are thankful this year for so many blessings - including Ben's health.  This year we all get to enjoy the same foods during the Thanksgiving meal.  He has requested "mashed botatoes"...I think we can make that work.  :)
 
Happy Thanksgiving!


Thursday, November 14, 2013

neuro appointment

We went back to the neuro this week.  It was an uneventful visit really - yea!!!  :)

His blood work all came back in the normal range.  Normal!  His white blood cell count hasn't been normal for a long time.  Since we started felbatol really.  His doctor thinks that the addition of felbatol to the Depakote is what was causing the issue.  Since he is off Depakote, the issue may have resolved itself.  But we will recheck labs again in 3 months to be sure. 

I reminded him that the two year mark is quickly approaching for us.  At the two year mark, epilepsy is considered to be in remission.  You can begin to wean meds and move on with life. 

I was disappointed with his reaction to my reminder.  He said that the research only supports that information for patients with consistently normal EEG's and for those with easy to control seizures. 

Ben's case doesn't fit within either of those categories.

Although we hadn't planned on weaning meds in January, I still liked the idea of being considered in remission.  But we will just continue to wait.  We will continue to count each seizure free day as a huge success - because it is!  We will keep using felbatol at his current dosage and check the levels in his system.  With time and growth he could potentially get to the point where his level is below therapeutic.  If he maintained seizure freedom at that point, we would know that it was time to wean.  We just have to wait at this point.

And weaning may be closer than we think.  I never imagined that we would have been able to wean the diet when we did.  You just never know about tomorrow.

He told us that about 15% of Doose kids will relapse.  Even after being med free and seizure free.  Even after normal EEG's.  We are always praying that this is not in Ben's future. 

Before we decide to start weaning, the doctor wants to do another EEG to make sure that Depakote wasn't normalizing it. 

We don't have to go back again for another 6 months.  That was like music to our ears.  We were on that schedule when things started in 2009.  6 month visits.  That feels like a huge step in the right direction.  :) 

 
We spy a seizure free future for Ben!