Wednesday, May 2, 2018


We woke up this morning to a gloomy sky and then some morning rain.  I love that the high today will be 74, which beats the 104 it is supposed to get to over the weekend.  Sonzee was up early this morning whimpering and uncomfortable.  She has been back at this routine for more than couple of days now. The catch 22 of her body ridding itself of Onfi is the fact that she is either more aware of her discomforts or now able to express them.  On the one hand it is so disheartening, but on the other, at least she can communicate with us.  Sadly, it does not put her in a much better position because we are still at a loss on how to help her.

It had been so long since she was in routine apparent discomfort, we were not sure why she stopped complaining, so we let it go.  We were fighting bigger battles trying to get her seizures under some sort of control, which continues to seem pointless, but it gives me something to do.  The seizures I know are an endless battle, the GI issues I feel should have some sort of resolve, yet the hamster wheel continues to spin, and we continue to get nowhere.  It is difficult to decipher if the seizures are causing the GI issues or vice versa, the two are so closely intertwined, we are playing another version of "which came first, the chicken or the egg?" and nothing we try seems to help either.

I feel like Sonzee's challenges are like the rain we had this morning, and weather in general.  They come down hard and unforgiving for a period and then they slowly get worked on, but not completely because there will be sprinkles for some time after.  Then eventually the skies will clear, and the sun will shine brightly, and we will enjoy those days for however long they last.  But the rain will become more frequent until monsoon season is in full force and we will do our best to stay dry.

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