Moving On

 

"Or whether it were two days, or a month, or a year, that the cloud tarried upon the tabernacle, remaining thereon, the children of Israel abode in their tents, and journeyed not: but when it was taken up, they journeyed."

James and I were just reading Numbers, chp. 9 this morning about how God led His people through the wilderness by a pillar of cloud by day and the appearance of fire by night. I wish I could say something very "spiritual" right now...but when I read this verse I think of having to "move on," and at a moments notice. I think of the work entailed and the leaving of a familiar place to perhaps one which is not so familiar. The truth is I love setting up camp, I have to immediately make "home" whether it be in the wilderness or a hotel room. And I am most comfortable once "home" is in place. When it is time to move on...well, not so much.

Ben's seizures are slowly increasing in frequency, but also in duration and intensity. We have known that we would be making adjustments in his treatment, and now it is time to forge ahead.

Our first step will be to decrease his diet ratio. We are going from 2:1 to 1.75:1. I'll just have to learn new recipes/calculations. We will have labs done after a week to see if his blood ketone level has come down. He is at a very high level, too high and it can make someone feel ill. In some cases, children have had better seizure control with lower ketone levels. Just to give some perspective, Ben's last level check was 7.4, our keto clinic does not like to have levels over 7. Our nurse was telling me that they have some children who at a diet ratio of 4:1 are only getting blood ketone levels of 2. We will stay at this "step" for 2-3 weeks. The challenge in all of this is not to make too many changes at once, therefore making it difficult to determine what is or is not working. The risk is always an increase of seizures thereby making it far more difficult to do one thing at a time. I do believe after this we will be making medication changes. These are the changes that are more challenging because they often are accompanied by disruptions in mood, sleep, alertness...One thing is for certain, the journey continues. Our goal is still seizure freedom for Benjamin.

My prayer is that God's presence and guidance would be as visible to us as it was to the Israelite's during their desert wanderings. I pray that I would not only be willing to move on, but filled with expectation, for though I may not know the territory this journey is leading us through...I do know Who is leading this journey!