Thursday, December 29, 2011

more of the same

Ben has had a lot of seizures today.

I think they are a combo of myoclonic and drop seizures although they are slow, not fast jerks.  They are happening about once every 2 or 3 minutes.

He's having a very hard time walking in a straight line. 

We gave him an extra dose of tranxene this afternoon because he was clustering so badly. 

Tonight he has had 2 tonic clonic (grand mal) seizures.  One lasted 2 minutes and the other 1 minute. 

I watched this video a long time ago - when we first got the diagnosis of Doose.  I'm going to post it here because alot of you have asked what the seizures look like.  It is difficult to watch.  I've never been able to capture Ben's seizures on video - mostly because when they are happening I can't think of anything else except to make them stop. 

I used to be able to relate to only the beginning - the tonic clonic seizure and the scene at the breakfast table.  But now we are seeing more of the rest of the video as well.  We are now seeing hundreds of seizures a day.

Here's the video:



The good news is that Lauren is doing well today.  She has been seizure free over a year.  You can read her blog here.  She has some lasting effects from the seizures.  She is attending a special needs kindergarten, BUT she is seizure free!

We have hope!  We just need to continue to persevere.

6 comments:

  1. We love you. We love Ben. We believe that he will have a great testimony of God's healing power! Praying and believing for freedom from the seizures as many times as you come to mind each day.

    ReplyDelete
  2. So many praying for Ben tonight! It is amazing how many people respond to a single request. All over the world people are praying, and we will continue until the healing comes. Blessings to you.

    ReplyDelete
  3. Thinking of you all, and praying always.

    Lynn

    ReplyDelete
  4. Father, You are Ben's healer. Your where his help comes from. Im humbly at Your feet asking that You bring complete healing to Sweet Ben. Your word says that Ben IS healed by Your stripes. Your in the business of restoration and I believe that You WILL restore Ben. Your word says that where 2 or more are gathered in Your name that you are there & there are many pleading for his healing. I keep thinking about the fact that your word doesn't wither and it doesn't return void. Thank you in advance Father for Ben's healing. In Jesus name, amen.

    ReplyDelete
  5. Thank you for sharing your heart with us. And your friends video.........watching it and sitting here in tears and prayer for you, your husband and Ben. Lord, we need your healing power!

    Patti T

    ReplyDelete
  6. Thank you for sharing this video...I am sitting here with tears...so touching to watch a little one...I carry Ben in my heart most of the time..I have been so touched by his little life and continue to pray for complete healing however the Lord sees fit to do it...and that his little body will sustain all that it has gone through...strength to you parents...I am sure it is heart wrenching at times...a scripture I posted on FB today..'Is anything too hard for the Lord' and of course, we answer 'no' so am believing that the Lord WILL HEAL....Jehovah Ropheka ...Margaret in Maine KVAG

    ReplyDelete