Micaela's staring spells began last spring. She would go into these long moments of unresponsive staring and then snap out of it like nothing had happened. By last September it had gotten so bad that we started trying new medications and rescue meds to help her. I hated it. They made me sick to my stomach, thinking about the destruction that could be happening to her brain as it went through so many little seizures daily. It seemed so unfair after having her awful nocturnal seizures under control that she should have to go through this, too.
Our neurologist is one of the most wise and caring health professionals we work with. While she listened compassionately and trusted my observations and judgements, she insisted that a 24-hour EEG needed to be done in order to get a better picture of what we were dealing with.
I dreaded the appointment. Micaela has spend the last year or so in that independent-don't-touch-me phase and thought of hooking her up to a few dozen electrodes sounded like my worst nightmare, but, we put the appointment on the books for June and got ready.
My heart aches with happy amazement. The appointment was full of one unexpected blessing after another.
First, Micaela was so sweet. Seriously. She held my hand like a champ as we navigated the hospital, gave out hugs like it was her job to every nurse, technician, and doctor. She even THANKED the EEG technicians as they hooked her up to the machine and tediously worked the electrodes off of her head the next day.
Second, Micaela didn't fight the placement of the electrodes. The pediatrician on call at the hospital suggested that we swaddle her like a baby, and Micaela loved it. She seemed relaxed but curious as her head was measured, marked, and decorated with rainbow-colored cables.
Third, our family was completely provided for the whole time. Our close friends treated Adela to a fun-filled sleep over with their kids complete with going to the rodeo and eating doughnuts. The nurses were constantly making sure Micaela and I had everything we needed and we were comfortable and well-cared for.
But, the last unexpected blessing was the one that still makes me catch my breath. When they completed Micaela's EEG set-up they showed me where the button was to mark and record the staring spells. I was vigilant, watching her carefully and marking each one of those horrid episodes. And, guess what, there was no seizure activity. None at all. Those staring spells are just staring spells, possibly caused by Micaela processing some internal feelings or sensations. I couldn't believe it. I had been so sure.
As they discharged us from the hospital yesterday, we walked into the sunlight with so much less fear and worry. My husband and I feel like we have been given some of the best news we've heard in years. Our little girl's epilepsy is officially controlled.
I know it is foolish, but I hadn't considered that this blessing might ever be ours. I am so thankful for those who have faithfully prayed for her all these years. She is a testament to God's goodness and the strength of faith. Oh, my Christian brothers and sisters, you have been so loving in your continued prayers for her and for us. Thank you.
Image explanations from left to right, top to bottom: Micaela had just gotten her EEG leads removed and was enjoying a doughnut, Micaela loved playing "Doctor Micaela" with her stethescope that Presbyterian gave her the whole time, this is the monitor recording her EEG at night (I stared at it a lot), Micaela had just finished getting her EEG placed and hugged her baby doll hard, Micaela was a champ during the light test, making sure that she doesn't go into seizures with light flashing.
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