Sunday, October 21, 2012


Ben is recovering from the flu.  His cough is still very persistent and he is EXTREMELY fatigued.  He literally slept all day and night on Friday.  Yesterday he took two very long naps and was still in bed by 6:30.  He slept until 8:30 this morning, but still took a morning nap.

His fever reached 104.9 early Friday morning.  We instantly stripped him down and did everything we could to get his fever down.  It went down and hovered at about 102 for the remainder of the day. 

I was a bit worried about excessive ketosis on Friday.  His breathing was very shallow with short breathes and his fatigue level was off the charts.  But given that his lungs were not completely clear and that fever makes you tired - it could have just been because of the flu as well. 

After talking with the dietitian about his eating patterns and the symptoms I was seeing, she said we could offer him some sugar free jello.  I was able to open a container and offer it to him.  I didn't have to weigh it.  I didn't have to use the ketocalculator to formulate a way to balance the 1 gram of protein in the jello with some fat.  It was an amazing and scary feeling at the same time.  We have weighed every single bite of food for almost a year now. 

It gave me hope of days to come!

He doesn't really like jello, but I thought for sure he'd jump at it.  He enjoyed a few bites, but quickly fell asleep again.  As I was able to get him to eat more food on Saturday, the breathing pattern improved. 

I'm just so thankful he didn't have a seizure.  Anyone is susceptible to a seizure with high fever, but Ben is at an even greater risk.  So the fact that he didn't have a seizure is wonderful news! 

I can't help but just have HOPE that we are beating this thing.  If he can be sick for a month (off and on) each time with fever, then have a very high fever, and still not see any seizure activity...I just know we are beating this. 

I can't wait to see what the EEG will tell us in December. 

For I know the plans I have for you,” says the Lord, “plans to prosper you and not to harm you, plans to give you HOPE and a future. Jeremiah 29:11

Image of A Hope and a Future necklace

1 comment:

  1. That's wonderful that Ben's stayed seizure-free through this whole ordeal! I hope he's back to 100% asap.

    I'm sorry I haven't been around since we found each other, but I can tell you've found a great circle of support and you're doing great!