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the adventures of a MAD mom

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I can hardly believe that the holidays are upon us once again.  They really snuck up on me this year.   A few days ago Casey said to his brother, “you will be getting your Advent Calender soon”, but what I heard was “I won’t be getting an Advent Calender soon-because I can’t have chocolate”.  Now, that could just be my mind playing tricks on me, but I don’t think so.    Even though Casey really looks forward to the holidays, I know that the they are also a most difficult time for him.  The bottom line is that he just loves food, and when all those wonderful things that we experience only once a year begin to creep into our household,  and his school, and his grandparents houses,  and his friends lunch boxes and the party tables, it must be the most challenging time of the year to be on this crazy diet.  So, we do what we can to make things seem as normal as possible;  an advent “bag” filled with a little treasure each day, a faux-pumpkin bread, peppermint flavored hot cocoa (sweetened with stevia of course).  And Casey bravely goes through each day, never wavering from the diet.  But once in a while I see that look pass over his face and I wish that for one day he could share in all the things he so misses.

In January, Casey will have his 2 year check up.  During our last visit with his MAD team, we discussed beginning to add some carbs back into his diet.  It will be a slow process while we monitor seizure activity with each increase,  but Casey is hoping to reach a more reasonable level of carbs by the end of 2013.  He has his sights set on eating “a bag of Lays Potato Chips, because there are only 15 carbs in the whole bag”.  I am not even certain he likes Lays more than any other chips –  he just likes the idea of eating a whole bag of anything, “because I can”.

I never thought I would wish for the day to come when my son could eat a bag of chips.


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