ImageGrace and I just returned from an overnight trip to the Epilepsy Unit at Children’s Hospital in St. Paul.  On Monday she started twitching on her right side.  Her leg, arm, mouth, and eye were involved.  Without knowing what was going on – this was great cause for concern.  We ended up in the ER.  They were able to stop the twitching with some IV medication.   I talked to the epileptologist that day, and again Tuesday when it continued.  Tuesday we changed a med.  I talked to him Wednesday when it continued and he had me give an extra dose of another med.  On Thursday it continued – and I talked to him, (four days in a row talking with him- although he is wonderful- it isn’t exactly settling).    Friday I talked to him in person in Grace’s hospital room.  Grace had just gotten through the gluing on of EEG wires and looked him right in the eye as he walked in the room.  “Beautiful Grace” he said, “what’s going on with you?”  He peeked at the computer screen and told me “she’s not is in status.”  Relief.  That had been our fear.

Grace did a great job while she was hooked up on the wires.  She had big seizures, she had little seizures, she twitched… within a few hours of her being hooked up I knew that the doctor would be able to see what was happening in her brain – help us know what was happening now, and that we could make a plan for what would happen next.  No more guessing!

Saturday morning he delivered the news that the twitching does not read on her EEG as a seizure.  He can see her body twitching – but her brain isn’t showing him anything to have him be concerned that we need to get it stopped.  “It could be that we have caught really early the tip of something new” he said…”and someday we’ll look back on this and have an explanation.”  He went on to say  “She’s going to do things…. We’ll figure them out. “  (I really love that he uses “we”- I genuinely feel his love for Grace and his desire for her to be her best.) The VNS we are having put in at the end of the month might be just what she needs to help.

Then he went into this sailing analogy.  If he had 20 ships that were Grace, he would know our course more.  If he had 10 ships that were Grace he’d have a ok idea.  But, there is only one Grace ship.    “We’ve been doing this a long time my friend”  he said, “and I feel like we are in the Caribbean of Grace’s epilepsy.”  She is healthy, she is growing, she is improving, her seizures aren’t under control, but they aren’t running her life – “let’s enjoy this”.

He went on to compliment Kevin and I.  He said we run a tight ship.  We do the maintenance.  We work hard to keep our ship afloat.  We pay attention and shift course when needed.  We haven’t kept her at the dock, we are taking her out and she is doing things.

So we watch.  When we feel like she’s hitting rough waters we’ll call him and we do have some things we can do with her meds.  But for now we are just going to enjoy Grace – keep to the path we have charted.

And what’ s even cooler than that is what else we found out when Grace was hooked up to the EEG.  Our girl has recently started giggling.  Little girl belly giggles.  Just the most wonderful sound ever.   We thought they were seizures.  Turns out they are not seizures.  They are real giggles.  Amazing.

Joy

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