Wednesday, September 12, 2012

prayer requested...

Ben is having a more difficult week.

Would you pray specifically that...
  • his body would rest tonight - all night and that he would sleep soundly, deeply
  • he wouldn't have any headaches tomorrow
  • that his appetite would return - meal times are becoming very lengthy and a battle
  • that the fatigue during the school day would not be so challenging for him
  • that we would have wisdom
We are growing concerned because it appears as if a pattern is developing.  His level of ketones seems higher than ever and as the ketones increase, his level of fatigue also increases.  This seems to make it actually harder for him to sleep all night long, so the fatigue worsens.  Then because he's so tired, his appetite decreases.  The less food he eats, the higher his ketones become, and so the cycle continues.

I'm thankful that our neuro appointment is on Monday.  We are praying for wisdom for Dr. Perry and Jessica, our dietitian.  We got blood work done this morning, so I'm hoping that it will give us some clues as to what changes to make.

We were not planning on weaning any meds until December, but it's becoming apparent that we need to do something. 

But...the fear that threatens to grip my heart as I even type that is...too much.  We have no assurance as to what changes to make.  We have to just make an educated guess and try to remove the right portion of the Jenga tower that is seizure control.  We won't know if we've made a wrong move until the damage has been done.

Please pray for peace and wisdom for us as we trust in His guidance.

No comments:

Post a Comment