Saturday, September 15, 2012

thankful

Tonight, I am so thankful...

  • for wonderful coworkers - they wore the Team Ben shirts on Friday to show love and support for our appointment on Monday
  • for incredible family - near and far - always checking in on Ben and helping in numerous ways
  • for friends who might as well be family - they always understand, always offer encouragement, and even think to send a card to brighten my day...love you!
  • for complete strangers who have only heard about Ben, but yet stop to inquire about him with genuine concern {this really blessed me today...it was a gentle reminder that if Benjamin has not been forgotten by those that don't know him personally, then our loving Heavenly Father has certainly not forgotten him either!}
  • for all the prayers that have been prayed
  • for all the hope that has been offered
  • for all the love that continues to bless us on a daily basis
Ben is still very tired.  He begged to go to bed last night at 6:00, but I managed to keep him up until about 7.  I had him sleep with me because of my own worries, and he slept ALL night!  It was wonderful for all of us.  :)  He took a long nap today, laid on me for most of the afternoon and evening and begged to go to sleep a little after 7 tonight.  I'm hoping he'll sleep all night again.

He was not interested in his beloved pancakes this morning at all. When I finally got him to take a bite, he gagged.  This concerns because I'm afraid that means he has reached his limit on this meal. He's eaten it every morning (and often begged for it at every meal) for months now. It's one of our 'go to' meals. It's a staple. I'm hoping if we take a break for a few days and offer him different things, maybe we won't lose it all together.  He did eventually eat two complete meals so that was good.

We've been on the diet long enough that it has become our 'normal' - our daily reality.   When we visited with a doctor for the strep throat visit (not his primary care doctor, but another one in the practice), I found it interesting that a few minutes after the initial evaluation she said, "I can smell the ketones on his breath, normally that is alarming as it means we have a pretty sick kiddo. I'm relieved to know there is a reason for it." I had forgotten the reason for the foul breath - it has just become part of our new normal.

We have been trying to determine what the cause for the fatigue, loss of appetite, and sleep problems could be.  It is very true that the meds can cause all of these.  But the diet could be the cause as well.  Being in ketosis decreases the appetite as well. Apparently, having too few carbs can interfere with sleep patterns.   Many children on the diet take a carnitine supplement because a deficiency in this area causes pretty significant fatigue as well.  But he's still trying to get over strep throat.  Because his body is working hard to fight infection, it could be that he just has little left to give.

Leeon and I need to make a list of questions for our neurologist.  We need to look back over the seizure journal and see if we can find a pattern to give us a clue as to which drug to possibly wean.  We could also discuss 'fine tuning' the diet by lowering his ratio, adding the carnitine supplement, or changing the amount of calories he gets at each meal (maybe changing to 4 smaller meals), etc. 

The bottom line is that we need to make a change, but it is imperative that we make one change at a time. 

Please pray that the neurologist and the dietitian will have supernatural wisdom as well as be in agreement (they are often coming from two different schools of thought).  Pray that they will have time in their schedules to really help us make confident decisions.

I'm sorry this post is so long...writing is sometimes therapeutic for me...

On a lighter note, we enjoyed my favorite movie together with friends tonight and it fits in perfectly with where we are right now in life.  The path ahead is dark and we can't see very well, but we need to 'just keep swimming' knowing that we are not alone.



2 comments:

  1. hi there, I haven't read all your blog enteries yet as I have just found you. My little one has just started the classic keto diet, and his health has plummetted. I have just started supplementing him with zinc and his immune system is starting to climb- hurrah! I am not sure if it is relevant or not, forgive if it isn't ! good luck and I look forward to learning more about Ben,
    cheers Mary-Anne

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  2. Love you. Love Ben. Praying for direction, wisdom, and peace for whatever decisions you guys make.

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