Our Story |
At seven months pregnant doctors discovered an abnormality on our daughter’s temporal lobe. On July 8, 2012, Roney and I became proud parents of a baby girl, Aubri Elise. After being released from the hospital 1 day after giving birth, we were eager to begin our journey together as parents.
Our life took a turn for the worst just four hours of being discharged from the hospital. As Roney held Aubri, he observed some discoloration of her skin. I went over to see and realized Aubri was completely blue. I remembered grabbing and stimulating her as Roney dialed 9-1-1. We arrived at Children’s Healthcare Of Atlanta Hughes Spalding where the staff was able to stabilize her, but as we journeyed through the extensive tests Aubri began to stop breathing continuously. Aubri was intubated and transported to Children’s Healthcare Of Atlanta Hospital Egleston. Dr. Chern was the assigned neurosurgeon that would soon save Aubri’s life. At just six days old, Aubri underwent her first brain surgery to fenestrate the arachnoid cyst that was discovered at seven months gestation. At six months old, Aubri and I were sharing a moment as she sat in her walker. I decided to snap a photo, but would soon be saddened by yet another “episode” where she would stop breathing and turn blue. Dr. Chern performed another fenestration to release the fluids from the arachnoid cyst. Upon discharge, we were educated on the effects, dosage and safety of the prescribed seizure medication. Weeks before Aubri’s first birthday, she was weaned off the prescribed seizure medication. This was declared a victory for our family. Our baby girl would soon live a normal life seizure free. August 2014, Aubri experienced a seizure that unfortunately her delicate body could not overcome. The ride in the ambulance was very different this time around. We didn’t see her turn blue. The silent seizures (episodes) we experienced before were now accompanied by jerking, unconsciousness, and extended limbs. The neurology team explained to us the effects of extensive brain surgeries and how her threshold was lowered; causing her to experience seizure activity. Now Aubri was diagnosed with epilepsy and would take medication twice daily. What we would soon find is that the prescribed Oxycarbonazopine (Trileptal) would not completely have her seizure free. Dr. Wolf, our amazing Neurologist, has approved Aubri for the cannabis oil permit with limited cannabis resources in Georgia. |