Have you ever?
Not understood a doctor?
Not remembered to schedule a follow-up appointment?
Wished for an easier way to communicate your loved one’s medical history?
Wanted a fast method to share urgent information in the ER?
Hope to create CALM from the CHAOS of CARING for a loved one?
Hopefully, we can be on this journey together.
Who am I? And more importantly, why should you read about my story?
My name is Catherine. My daughter Alexis was born 5 years ago, but her traumatic story starts even before she was born. Alexis was a twin. Her sister Kaitlyn died in utero at 29 weeks. I was ordered to strict bedrest and endured another 8 weeks of pregnancy carrying live Alexis and deceased Kaitlyn. Alexis was born via c-section at 37 weeks, with 19 different doctors and nurses assuring that Alexis and I made it out alive. Even though Alexis was full term, she was only 4 pounds. We lived in the NICU for 72 days, trying to piece together all of her defects. By her first birthday (which ironically we spent in the hospital), we had identified the following anomalies – right side choanal atresia, cleft of soft palate, bilateral severe profound hearing loss, right side small right eye, low vision, heart defects (ASD and PPS murmur), fusions of the cervical spine, microcephaly, clenched hands, abnormal brain spikes, kidney problems (pseudohypoaldosteronism type II), and obstructive sleep apnea.
She is now 5 and remains undiagnosed genetically, a medical mystery, a scientific misfit.
So that’s how we got to where we are today.
She is seen actively by 18 pediatric specialists. We have created a medical team that works with us, supports us and listens to us, since we are the primary caregivers for our daughter. We consult with them. They recommend treatments based on their experience. We recommend treatments based on our observations.
In this journey, I have created some simplifying solutions that I think help our family maintain calm and peace while caring for Alexis. I hope you will find them useful as well.