“Mommy, I don’t want to go to Duke today.”
“Why do I have to see the doctor?”
“Why do they want to get my blood out?”
“Mommy, I’m scared.”
Oh, how my heart aches. Fielding the questions and trying to explain something that seems so unfair just plain hurts some days. When she grips my hand a little tighter and looks up at me with those big, brown eyes and tells me she’ll be brave, I want so badly to take it all away from her.
But I can’t.
So we smile and pray and hug and make jokes and push forward. And I watch her rattle off her name and birthdate and chat with all of the people and bounce around the children’s hospital like it’s totally normal to be there, and I am in awe of the strength the Lord has given her.
Today’s trip to Duke was an emotional one. We were given a lot of hard information. Referrals for physical therapy again. Referrals for behavioral therapy. Recommendations for another medication to add to our regimen. More testing ahead. Loads of bloodwork (and veins that would not cooperate).
We’ve been struggling with communication and feeling like we were getting pushed off, but that was not the case today. They were very thorough, and spent a long time with us- and we even saw one of the head doctors today for a change.
Since Harper’s seizures seem to be responding very well to this new medicine, we are staying the course with it. It is a very strong medicine and we have had three failed medications already, so our options are limited. We were concerned about side effects, but they aren’t sure that the things we are seeing are necessarily from the medicine, so we are in a process of testing some things.
Based on the previous EEGs and the video recording of Harper’s last seizure, their verdict is still that she wouldn’t be a candidate for epilepsy surgery. Her seizures are just too unpredictable and happening in different areas of her brain. However, they have not ruled out VNS therapy, but that’s on the back burner for now since this medicine is working so well for seizure control.
They also felt the need to share with us some concerns they have moving forward. First, Harper’s age. Statistically speaking, children with structural abnormalities (like Harper’s brain issues) have a 50% chance of outgrowing seizure disorders by their teen/early adult years- not so bad. However, the doctor kept emphasizing that we have a LONG way to go because she is so young still. And the fact that we’ve had all the failed meds already makes that even more less-than-ideal… but we know our God and we know what He’s done so far in Harper’s life and we aren’t bound by statistics and opinions!
Second, we were introduced to something called ESES. It is a rare form of epilepsy that can affect children as they have seizures in their sleep. Harper’s EEGs seem to be trending in that direction. She did not have a high enough percentage last time to be diagnosed, but the concern is that she’s heading that way based on the activity they detected. The problem with ESES is that on top of seizures and disrupted sleep, there is also a regression of cognitive functioning- she could actually lose developmental skills she’s mastered. The plan is to have a repeat ambulatory EEG in a few months to see if there’s been any progression.
We have much to pray about and consider and decisions to be made. We had appointments made at Johns Hopkins in the next couple of months, but based on the information we received today and the testing coming up for all of this, we aren’t sure this is the time to make the switch.
While it wasn’t a day of great news, we’re focusing on the positive. Her seizures are controlled right now. She’s happy and healthy. We don’t have to think about surgery at this point. And she has already overcome so many obstacles. We aren’t giving up- we know that God is bigger than all of this, and we know her story is far from over. ❤️