Tuesday, February 7, 2012

an entire month of seizure freedom

Ben had his last seizure on January 6th.  We've made it an entire month without any seizure activity. 

Wow!!!!

That may not seem like much, but it is huge! 
This whole thing exploded on July 5th and we had a 30 minute EEG done and the results were abnormal.  Then a vicious cycle began - increased seizures, new meds, honeymoons, and hospital admissions.
We were admitted to the hospital on August 23rd - 25th. 
Then again on September 28th - October 1st. 
Then we went in again on November 14th - 18th. 
Our final admission was December 25th - 28th.
The first week of January we saw the most seizure activity of all time.

When I look back and think of where we have been it makes the fact that we have had over 30 days of complete seizure freedom even more exciting. 

This month we have:
~ not had to call Ben's neurologist on a daily basis
~ not had to use Valium as a rescue med
~ not had to write down seizure activity in his journal
~ not had to see him wearing the helmet
~ not had to sit with him at every minute to make sure he was safe
~ not had to sit helplessly watching the clock while he lay seizing


Looking back at the journal I am astonished.  On January 1st, I walked back into the room (after leaving him for about 2 minutes) and he was eating his breakfast.  His face was absolutely covered in butter and cinnamon.  He was having so many myoclonic jerks that he kept falling into his plate and/or hitting himself in the face with the pancakes.  It was heart wrenching to see him that way.

I have a video on my phone of him trying to play his drums and his hands wouldn't stop jerking upwards so he was hitting himself in the head with his sticks - with his helmet on.  He could only use the foot pedal for the bass drum because his hands wouldn't cooperate.  We had to sit behind him as he played to ensure that he didn't fall during a seizure. 

He was having hundreds of these 'small' seizures every day.  He was having multiple tonic clonic seizures in a day.  On January 3rd, he had two tonic clonic seizures - those were his last.  Then the drops started to decrease.  He went from having 9 every 10 minutes to having 5 every 10 minutes.  Then they dropped to about 5 every hour.  On January 6th, he had about 25 'small' seizures in the entire day. 

And then just like that the seizures stopped.

Our hearts are thrilled!

Our prayer is that it will continue.  Wouldn't it be great if we could update the blog every month with the same great news?

I'm so thankful that we are experiencing our miracle, but I'm very aware that there are so many that haven't yet.  There are a lot of "Doosies" out there who are still struggling with too many seizures...too many kids still at the hospital...too many people whose hearts are broken...I can't explain why the struggle eases for some and continues for others.  But I can tell you that my Father remains the same whether you are on the mountain top or in the valley.  Stay strong - you may wake up tomorrow and realize it's the first day of your miracle...

5 comments:

  1. Crying happy tears and praising and thanking God. Hallelujah !

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  2. We have been celebrating all day! Praise God!! Love you!

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  3. So thankful for the blessing of the past month for your family! And, looking forward to reading your 2-months of seizure freedom post!

    Happy, happy!!

    Lynn

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  4. Such an overwhelming gratefulness has come over me as I read your post... I just can't stop crying! I can't wait to give Symi the good news in the morning.
    Of course she has such faith in all of the prayers she has prayed for Ben...She would never expect anything less from the Lord! She's been very matter of fact when talking to me about Ben and his healing. She's understood in her heart it was all just a matter of time!
    Oh to have the faith of a 4 year old!
    Love you sweet friend!!

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  5. Yea!! We are so happy for your family!

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