She is joy 

Harper is the picture of what joy should look like.  An entire day of being poked and prodded and drug from one appointment to another, and she literally bounced down the hospital halls, greeting everyone she saw with smiles and her sing-song voice.  She sat patiently as they put probes all over her head, laid quietly as they ran the EEG, and allowed them to remove it all and clean her head without a whimper. The results of her testing were good.  Basically her medication is doing the job and her EEG did not show any seizure activity.  There was a discrepancy in her test between the sides of her brain, indicating that one side is not as strong.  This is due to the areas of cysts and dead brain tissue that she has, and could be the cause of the seizures… But once again, we can’t say what that will mean for the future.  It could become more of an issue down the road in terms of her learning and development, which we’ve always been warned of, but only time will tell as she grows and develops.  For now she seems to be doing just fine! We did discuss the side effects of her medication with the neurologist.  Harper has mood swings, a loss of appetite, and she does not sleep well at all.  She’s very restless and has a difficult time staying asleep, and moves constantly when sleeping.  We are trying a prescription vitamin for a month to see if that helps, and if not we’ll reevaluate with the doctors. Now we do six months of this routine, and then back to Duke for another EEG and consult with the neurologist- which will also be around the same time as our next MRI and neurosurgeon appointment.  Next week is a follow up with our pediatrician, then developmental testing at the hospital clinic here in town the following week… And then, hopefully, an uneventful spring! As I start to feel weary of this journey, fearful of the unknowns, and, well, just plain whiny, I think of my girl… Of her fight for life, her encouragement to others, her courage and strength in these scary situations, and her bubbly, giggly joy that overflows… And I know that God has blessed me with a constant reminder of His goodness in all circumstances.

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