Nora had one seizure cluster today. We refer to her seizures as “clusters” as they involve several 1-second to 60-second seizures over a 10 to 20 minute span.
These seizures leave Nora drained, her body loose and jelly like. It’s exhausting to experience with her. Every ounce of her body tenses, her eyes shoot, locked in one direction, or rolling loosely to the sky. Her core, arms and legs tense, rigid in your hands. Her eyes track you between each seizure but her bright-eyed countenance is lost.
You can’t control the seizure, but you can time the seizure, turn her on her side, monitor her breaths, wipe her sweet tulip mouth and talk to her.
Everyone says something different when they hold Nora during a seizure.
Tyler holds her close and whispers gently, “I’ve got you baby. Daddy’s got you. Almost done. Just a few more…”
Tia sweetly coos, “You’re so patient… yes you are. So patient.”
Nanna softly reassures her, “It’s okay. Yeah, you’re okay.”
Me? It depends. If we are alone I sing, “All day, all night, angels watching over me my Lord. All day, all night, Angels watching over me.”
If I’m in a group, I whisper, “It’s okay sweet girl. Momma’s right here.”
In the hospital, when Nora was diagnosed with a seizure disorder, my initial assumption was that stopping her seizures would require some calculated dosage of medication twice daily and that would be the end of it. Boom. Seizures under control. That’s how medicine works, right?
I wish it was that simple.
Every brain is beautifully unique, therefore treatment of each brain is also unique.
The day we wound up in the emergency room, Nora had between 6 to 9 seizure clusters within a 24-hour span. Since we have been home from the hospital she averages between 1-3 seizure clusters per day. This is quite an improvement. We are so thankful for the medical support that has gotten us to where we are today.
Although Nora is having less seizures, it is not considered a successful treatment unless she is seizure-free.
You see, seizures come at all hours of the day and night. They disrupt Nora’s play, sleep, and even her appetite. Seizures steal her energy, ability to focus and play. All of which are fundamental components to her development. In Nora’s specific situation, her ability to engage and work towards developmental milestones is critical due to her unique brain structure and the many unknowns in her future. In treating Nora’s seizures, the goal is to minimize the amount of seizures while allowing her to be as alert as possible. A seizure-free sedated baby can’t work towards reaching developmental milestones either…. You see, it is remarkably delicate.
To combat Nora’s clusters, our neurologist recommended an aggressive 7-week steroid treatment. The treatment includes intense short-term side effects; a weakened immune system, potentially high blood pressure, irritability, hyperactivity, and weight gain (increased appetite). The neurologist put the fear of God in me with her emphasis on the weakened immune system, “I’ve had healthy babies catch common illnesses and actually die due to a compromised immune system.”
Tyler and I thought and prayed about putting Nora on this treatment. So many unknowns. But, if it worked, Nora could be rid of her current seizure clusters. Though the neurologist made it clear other types of seizures might develop in the future, the treatment brought us hope.
Tyler and I agreed that the potential benefits for Nora were worth the short-term side effects of the steroid medication.
Just a few days before we were supposed to start the treatment, Nora went a day without a seizure.
I called the neurologist. Hopeful. She said we could hold off on the treatment as long as Nora was seizure-free.
Nora went another day.
We felt so normal. So relaxed.
You see, after you experience a seizure with Nora, whether you hold her or not, you are exhausted. It’s like your body is tensing with hers, your mind bending, your heart racing.
Soon after its over you might find yourself prone to binge on some type of comfort food. Once, while with my family, Nora had a seizure and my mom, cousin and I had a craving for one of the all time greatest comfort foods. Pizza. Obviously.
When several family members returned from an outing they said, “you ordered pizza without us?!”
Our reply was, “The baby had a seizure, so we had to order pizza.”
It was only logical.
We had two beautiful seizure-free days with Nora before she had a seizure… then another seizure…
We went ahead with our plan to start the steroid treatment.
Nora started the treatment 6 days ago.
We are told that we will know if the treatment is effective within the next week. Although we will need to remain on the treatment for the full 7 weeks regardless of her response as it takes that long to taper off the medication.
We are hoping and praying Nora’s body responds to this treatment and leaves her free of seizure clusters.
Will you pray for Nora every day this week?
Pray around your dinner table, as a family. In your churches as a community. Pray beside your bed in the quiet of the night. Pray in the morning over your coffee and kindle. Pray at noon on your lunch break. Pray in the evening as the stars come to light. Pray your heart out for hope, for healing.
Photo credit: Jessica Rice Photography