Another day at Duke done…

Our Duke trip was productive!  As usual, Harper was amazing… She smiled and laughed and bounced, did everything they asked, and checked out just fine.  We went over her last seizure with the neurologist, and after consulting with an epilepsy specialist, the decision was made to change her anti-seizure medication.

Any changes like this have both good and bad considerations.  This new med has different side effects than her current med- it does not cause the mood and temperament issues that we’ve seen, and it actually tends to make people sleepy (yay!).  However, it does decrease appetite (and she already doesn’t eat much), and it only comes in a capsule, which means we have to open it and sprinkle it on her food and get her to eat it all. (Slightly ironic given that it decreases her appetite 😕).  

I’m thankful that the doctor took our concerns seriously and is being proactive, but also slightly nerve-wracked to change what we know works.  We know that her current medicine does a good job of controlling the frequency of her seizures, and it’s the only one that’s ever been used on her, so we’ll be on pins and needles as we watch this transition over the course of the next month.  However, as she had a mild seizure in her sleep last night after our busy day, I feel more certain that it’s time to make the change.  

This journey is one full of twists and turns, one full of worries and fears, long nights, and uncertainty.  But it’s also one of such treasure and joy- watching this miracle that wasn’t expected to do anything bounce down the hospital halls, pointing out colors and shapes, listening to her talk and sing, so curious about the world around her- it’s a gift.  And feeling God’s presence in such a real way, watching Him work on a daily basis, and learning to trust His plan, His way, in His timing- that’s the biggest gift.

  

2 thoughts on “Another day at Duke done…

  1. Sue Stevenson says:

    Heather I am glad that the doctors take their rime and work so hard for little Harper’s cause. You and Kirby have been relentless, and she is just soooo precious.

    Liked by 1 person

  2. Angela Ray says:

    Every time I look at that sweet face it reminds me that God is and always will be in control. Although she is your child, she is God’s reminder to the rest of us just what miracles He is capable of performing. She radiates God’s presence in her life. We love her and your entire family. Hugs and prayers.

    Liked by 1 person

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