Wednesday, November 23, 2011

increased seizure activity

Ben ended up having another tonic clonic seizure at 2:00am and 6:00 am.  Since then he's had 2 more and a myolconic jerk.  After one of the seizures today, he cried for a long time.  I'm almost wondering if it was some kind of unusual seizure because his hands were stiff and clasped for the duration of his crying spell.  I managed to get him to tell me that his head was hurting.  But because of the diet, we can't give him children's tylenol anymore.  We have to give him 1/2 of an adult regular strength so Leeon ran to get some for him.  After that he was ok.  We went to lay him down for his nap and he had another one.  This time he fell asleep quickly.

I know that we are in this for the long haul.  We've committed to this diet for 3 months and we can't look at isolated events like these past 2 days to determine whether the diet is working or not.  It's just that the diet is hard enough in itself - the increased seizure activity only makes it harder on his body and it takes away some of the motivation to eat the foods. 

Ben brings such encouragement to me and he doesn't even realize it.  Today we went over to his Nana's house to play on her swings and as soon as we turned on the radio, his absolute favorite song came one.  It is Blessed be the Name of the Lord.  He gasped and said, "Turn it up, turn it up!"  If you haven't listened to it, I've posted a link on the sidebar.  The lyrics talk about praising God in good times and in bad times.  Even in loss we still have so much to be thankful for.  Ben has lost a lot, but he is still showing us how to live with a grateful heart. 
We are thanking God:
  1. That Ben is eating better (although I will have to show pictures of the 'chicken nugget' creation I attempted last night)
  2. he chose to drank the cream without diet, caffeine free soda this morning
  3. he wants to play outside and get involved despite not feeling 100% yet
  4. God's presence has been a "ever present help in times of trouble"
We are praying:
  1. that the seizures will stop
  2. that we will be able to stay focused on the end goal and not be lost in the moment by moment struggle
Thank you for praying and loving us through.  I'm so glad that we have a God that holds on us to even in the darkest of winters...

No comments:

Post a Comment