Olivia and her twin sister, Hailey, were born at 37 and a half weeks after a normal pregnancy. We found out that Olivia had a form of epilepsy after having her first seizure just hours after birth. She was originally diagnosed with a rare type of infant epilepsy called Ohtahara Syndrome but has since had her diagnosis changed to Multi-Focal Partial Epilepsy. During the first trimester, Olivia's brain did not form properly and she has what is termed cortical dysplasia. She had a lobectomy of her left temporal and occipital lobes when she was 15 months old and a functional hemispherectomy when she was four. Both were performed at Shands Hospital at the University of Florida. She has endured many long hospital stays, testing and medications. She is globally delayed but has made many achievements, ones the doctors never thought possible. Olivia is one of the happiest, most inspiring, and amazing little girls. We are so honored that she is part of our family.
2015 - Present
Livy continues to struggle with medical challenges. She has seizures nearly every day despite being treated with multiple anti-epileptic medications. Her cognitive and physical challenges persist as she ages. But together with her sister Hailey and the rest of her family, she has shown the world what can be done when one does not give up hope. For regular updates, please visit our Facebook page at Facebook.com/LivysHope.
4/11/2015: First time our family left Florida together as a family since 206. We went to Washington DC to participate in the National Walk for Epilepsy. Hailey and Livy were named Presidents of the Day of the Foundation and Hailey presented at the opening ceremony the day of the walk.
2/3/2015: Livy's femur has drifted away from her pelvis which will give some relief to the pain caused by her dislocated hip.
1/8/2015: New wheelchair arrived - She had the same wheelchair for 8 years!
12/19/2014: Livy is recognized as "Star Student of the Month" for Outstanding Achievement
12/2/2014: Reinsertion of Supprellin Implant
9/15/2014: 2nd Round of Botox injections - No significant improvement
6/9/2014: 1st Round of Botox injections - Some improvement seen and less discomfort
5/15/2014: Appointment with physiatrist - decide to proceed with Botox injections
4/17/2014: Pain increasing in hip - Another visit with orthopedic doctor - suggests seeing a physiatrist
1/28/2014: Visit with orthopedic doctor - Livy showing pain in hip
1/21/2014: Intensive Therapy Session
12/3/2013: Reinsertion of Supprellin Implant
10/30/2013: Intensive Therapy Session
7/1/2013: Intensive Therapy Session
5/29/2013: Livy receives Student Award at school
5/24/2013: Orthopedic doctor verifies that Livy's left hip is completely dislocated. Surgery is not recommended.
4/9/2013: Endocrinoloist Visit - Concern about Livy's two fractures - possible link to Supprellin Implant
3/11/2013: Intensive Therapy Session
11/29/2012: Cast removed
11/27/2012: Reinsertion of Supprellin Implant
10/26/2012: Admitted to All Children's Hospital due to increased seizures
10/23/2012: Left Calcaneus Fracture - Casted
10/1/2012: Intensive Therapy Session
6/16/2012: Livy and family present at the 2012 Family Cafe Conference in Orlando, FL
5/21/2012: Intensive Therapy session begins but ends early due to physical exhaustion and increased seizure activity
5/15/2012: X-ray reveals a subluxation (dislocation) of Livy's left hip
3/5/2012: Livy is introduced back to school with additional safety precautions in place and a personal aide
1/3/2012: Intensive Therapy Session
11/10/2011: Livy falls from table at school
9/13/2011: Supprellin Implant Surgery performed so hormone injections no longer need to be administered
7/21/2011: Begins monthly hormone injections to counteract the effects of Precocious Puberty
12/25/2010: First time we can enjoy a nice Christmas in six years
9/20/2010: Returned Home
9/17/2010: Admitted to All Children’s St Pete with an Ovarian Cyst
5/3/2010: Return Home after a new medication introduced
4/7/2010: Seizures return and admitted to All Children’s in St.Pete
3/2/2010: Cast is removed
2/1/2010: Leg broken at school and fitted with full leg cast
3/11/2009 - 12/31/2009: Recovery and relative peace
3/10/2009: Home from Shands
3/5/2009: Seizures finally subside after an additional medication change
2/18/2009 - 3/1/2009: Seizures still uncontrolled after surgery
2/17/2009: Contracts severe flu with 104 degree temperature during recovery
2/13/2009: Left sided functional hemispherectomy is performed (left side of her brain is completely disconnected)
1/19/2009 - 2/12/2009: Moved back and forth from the ICU to the pediatric floor multiple times due to breathing risks caused by seizures and medications -- she is having 100+ seizures per day.
1/19/2009: Readmitted to Shands since seizures were still not controlled and got worse
1/16/2009: Returned Home
1/9/2009: Admitted to Shands due to uncontrollable seizure activity
1/3/2009: Home from St. Joe's
12/25/2008: Admitted Christmas evening to St. Joe’s Hospital in Tampa, FL due to uncontrollable seizure activity
1/8/2008: Livy starts school at Paul B. Stephens
9/26/2007: Admitted into Home Hospice Program for nursing care and follow up
9/25/2007: Returned Home after medication change
9/20/2007: Taken back to Shands
9/13/2007: Returned Home
8/23/2007: Airlifted to Shands Hospital
8/21/2007: Admitted to All Children’s St. Pete for increased seizures
3/24/2007: Olivia’s 1 year surgery Celebration Party
9/2006: Seizures return
6/16/2006: First swallow study
5/5/2006: Follow up EEG shows irritable neurons in both hemispheres and a breech rhythm – expected after skull is opened
4/21/2006: Livy is fitted for her first wheelchair
4/4/2006: Discharged from Shands
3/25/2006: Subdural shunt placed to relieve pressure from fluid built up post surgery
3/20/2006: Left sided Lobectomy to remove a portion of Livy's temporal and occipital lobes performed at Shands Hospital
3/3/2006: Meeting with Dr. David Pincus to discuss the possibility of brain surgery
1/20/2006: Discharged from Shands
1/16/2006: Admitted to Shands for 24 hour EEG monitoring
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
12/15/2004: Hailey is born at 5:22am and Livy is born at 6:38am. Pediatrician notices that Olivia is having unusual eye movements and admits her to the NICU at All Children’s in St. Petersburg, FL for possible seizure activity.
12/10/2004: Final ultrasound – ventricles at normal size
10/2004 - 12/2004: Multiple ultrasounds performed and Livy's ventricles were decreasing in size each time
8/30/2004: Abnormal size of Livy's ventricles seen on ultrasound. We were given a wide range of possible outcomes from nothing wrong to severe disabilities.
6/15/2004: Found out we were having twins!
4/23/2004: We're pregnant!