I believe in my heart Mikayla would not be alive if we had not found Dr. Mary Zupanc, Chair of Pediatric Neurology and the Comprehensive Epilepsy Center at CHOC Children’s Hospital. We call her Yoda, she is small but her wisdom is great. CHOC Children’s Hospital is the only Level IV Comprehensive Epilepsy Center in California and has 6 of the countries’ 20 Pediatric Epileptologists. Their ability to read an epileptic EEG, the physical manifestation of a seizure and come to an early diagnosis is artistry. Admittedly, my admiration for Dr. Zupanc was not immediate. Some of the most painful things I have ever heard have come from our conversations with her about Mickie’s prognosis. “Your daughter will never be normal” and “She may not walk or talk” rush to the forefront, but her candor and are exactly what we needed to make the best decisions for Mikayla as her health quickly deteriorated before our eyes.

Our hero walked through the doorway as Preston and I were packing to leave. “Hi Dr. Z”, we said in unison. She was in her signature style, a custom dress under her stark white coat. Mickie greeted her “Hi Dr. Z, I love you”. Dr. Zupanc beamed as she interacted with Mickie. I shared my concern that Mickie has been having staring spells at school and waking up regularly at night. She acknowledged the concerns and said she would see what the video EEG had to say and discuss her findings with us during rounds the next day. “Mickie’s allowed to daydream, the staring is inattention,” she said to me with a reassuring wry smile. “Ok good, Yoda knows best”, I thought. She confirmed Mikayla would be hooked up for 2 nights and gave us all hugs before leaving. During the long term monitoring stay one guardian remains in the room with the patient. Gabe settled in with Mickie as I took Preston to the hotel for the night.

The next morning I greeted my weary-looking husband with a berry smoothie and a kiss. He reported Mickie had aroused at 1 am and woke up at 6 am. I was grateful we had the night time arousal recorded. Mickie began to complain her head was hurting and itching badly, a common reaction to the electrodes glued to her scalp and wrapped with gauze and tape. Mickie rarely complains due to an abnormally high pain tolerance since brain surgery. We called for the nurse. After being administered Tylenol and Benedryl, Mickie repeatedly asked to go for a walk. Preston, Gabe and I tried to redirect her with offers to play, sing or dance. She began to cry, complain and fuss. My heart hurt. Each LTM brings new challenges. Religating a 4.5 year old little girl in need of vestibular input to a tiny hospital room was one of them. Stress and agitation filled the room. I could sense Gabe’s frustration as he couldn’t answer his ringing phone and had work to do on his computer. I too expressed my desire to write my blog as I wanted to share it in a timely matter. I could feel his resistance and I know he felt mine. I thought about how difficult this experience was for us even with Mikayla’s miraculous progress. The stress of the the unknown is like a black cloud hanging over us. I took a moment to acknowledge what I pretended not to know. There is always the chance our Yoda will walk in and tell us Mickie’s inside does not look as good as the outside.

We needed a pick me up. Like an angel with wings, my childhood friend and fellow special needs mom, Briana, flew into the room. She has walked the journey with us and always brings Gabe donuts. Gabe smiled at her. We were midway through our 21 day cleanse. He envied the pink box before donating the sugary delights to the nurses.  The gesture brought comfort. Briana is a powerful advocate for her daughter, Lola. Lola has Phelan Macdermid Syndrome, a rare chromosomal disorder in which a portion of the long arm of chromosome 22 is missing. I grew up with Briana and her sister, Rebecca. We were drawn close by our mutual fight to preserve our daughters’ quality of life. I love having a friend who understands our challenges and supports with levity, laughter and grace. Mickie jumped in her lap and we watched her transform. They made silly faces at each other as our little girl started giggling with delight. Isn’t this what we all need? A friend who is willing to stand in the fire with you and make you laugh when you’re on the verge of crying.

After Briana said her goodbyes, Mikayla went into a full meltdown.

She did not want to be held or touched. Our attempts to console her were futile. My anxiety increased as she refused to take her anti seizure medication, Depakote. They are sprinkled onto her yogurt and given prior to breakfast and dinner. Her nurse said the last option would be to give them to her through her IV but this would entail waking her throughout the night to administer the proper dosage. An hour passed, she was still in meltdown. I fought back tears. Gabe encouraged me to leave with Preston to finally get something to eat. I did not want to leave.  I finally surrendered. Preston held my hand as we walked to the elevator. “It will be ok, mommy,” my 6 year old reassured me.

I woke the next morning and called Gabe. “They are removing the electrodes, we get to go home. Dr. Z will be here soon to debrief.” I checked out of the hotel with Preston and headed to CHOC. My heart raced as I walked into the room. “Dr. Z just left baby”, Gabe got straight to business. “Mickie’s EEG looks great. No changes to meds. The night arousal looked fine. We just need to work on behavioral training Mickie to go back to her bed at night”, he relayed. “Nothing is wrong? She is ok? It looks good?”, I asked Gabe in need of validation. “Yes, baby”, he said offering a hug. “Oh thank you God!” I exclaimed with relief and gratitude. Mickie chatted up the nursing station as we waited for a volunteer to escort us to the hospital entrance. We said our goodbyes to our CHOC family and loaded up in the minivan. As we drove north my mind raced. I thought about our journey with mixed emotions. I felt profound gratitude for God’s healing and the team that has assembled to support my daughter. I was hurting for Mickie’s fellow epilepsy warriors who have lost their battle and hopeful for the ones still fighting. I wanted to jump for joy and weep at the same time. There is so much work to do. I managed to eat healthy, meditate, do yoga and write my blog during my stay. Baby steps…


Mrs. Griess

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