12/15/2005: Hailey and Livy’s 1st Birthday
12/8/2005: First Appointment with Dr. Paul Carney, the Director of the Pediatric Comprehensive Epilepsy Program at Shands Hospital at the University of Florida in Gainesville
11/10/2005: Discharged from Hospital
11/8/2005: Admitted to All Children’s Hospital for EEG
10/15/2005: Start seeing seizures again, complex partial and secondarily generalized
9/14/2005: Olivia is admitted to Home Hospice Program for nursing and follow-up
9/10/2005: Welcome Home Livy – almost 9 months old!
8/27/2005: Olivia comes home for a long weekend and then back to Hospice
7/26/2005: Olivia is admitted back to Hospice for observation
7/17/2005: After only five days, no seizures are recorded
7/12/2005: Vigabatrin is started in the hospital
7/3/2005: Olivia is moved back into Intensive Care
6/29/2005: Ketogenic Diet is attempted
6/26/2005: Olivia is admitted to All Children’s due to low oxygen saturation levels as a result of seizures
5/20/2005: Olivia is admitted to Woodside Hospice House for long term care
5/9/2005: Doctors surgically implant a feeding tube. Olivia is no longer able to eat by mouth due to seizures and heavily sedating seizure medications.
5/6/2005: Olivia and family are flown by a donated private jet flight back to FL and she is readmitted to All Children’s Hospital in St. Petersburg.
2/17/2005 – 5/6/2005: Jon, Allison and Hailey travel back and forth from MA to FL seven times while Olivia is at Boston Children’s. Doctors confirm the Ohtahara Syndrome diagnosis and change medications. They also attempted a series of ACTH (steroid) injections to stop the seizures. We had incredible difficulty arranging a medical flight back to FL through our insurance.
2/27/2005: Olivia is baptized at Boston Children’s in the NICU. Since Livy is doing so poorly, we discuss a DNR (Do Not Resuscitate) with the ethicist.
2/17/2005: Olivia is admitted to Boston Children’s after increased seizures that we were not able to control with emergency medications
2/14/2005: Meet with Dr. Blaise Bourgeois, Director for the Division of Epilepsy and Clinical Neurophysiology
2/13/2005: Fly to Massachusetts to obtain second opinion at Boston Children’s Hospital
2/2/2005: Olivia comes back home on Phenobarbital for seizures. Doctors are not sure what is causing them.
1/7/2005: Olivia is admitted back to the NICU for increased seizure activity called infantile spasms
1/6/2005: Olivia comes home after no seizures for a week