Heading east again

We are eastbound once again!  We had a very busy night at Duke as they ran tests and got Harper hooked up for the EEG (which was a battle to end all battles), but it felt good to have so many people focused on her who were in tune with her condition.

We had rounds with a team of eight doctors this morning, then a special neurological team of four, one of whom is our regular neurologist.  They had received conflicting reports about her seizure activity yesterday, which was frustrating, but we got everything straight and they decided that with her as stable as she was (and with so much medication in her system) there was really no need to make her stay up there.

So, the final verdict?  There was no sign of any new developments on the EEG, and once again despite hours of seizing Harper is showing no signs of brain damage from it.  She did suffer from status epilepticus (life threatening seizures that last longer than five minutes),  but they’re categorizing it as a breakthrough seizure, which could be triggered by a number of factors including not enough meds, too much medication, growth spurt or change in metabolism, low blood sugar (wasn’t the case for her this time), not enough sleep, or a virus or infection… In other words, lots of possibilities but we can’t tell for sure, so we are staying more aware of eating and sleeping habits and germ exposure.

We are adding a second medication twice daily now, and are waiting for lab results to see if we need to increase our current med.  Other than that, we keep our current emergency plan in place, and continue to pray for peace and complete healing.  We’ve basically been told once again that given her history and the trauma her brain has been through, this is just to be expected and we do our best to manage things.

We cannot say enough how grateful we are for all of you who walk this journey with us.  While this wasn’t exactly the answer we were hoping for, we are thankful that we once again get to take our girl back home, and that she has so many people out there that love her.  And God has given us a girl who is a constant reminder of the gift in each day, who demonstrates strength and fortitude in times of trial, and who exhibits the beauty of grace as she comes through challenges with smiles and love and forgiveness even when we have to put her through the most unpleasant of circumstances.  We are blessed far more than we deserve ❤️

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