A Journey Of Hope

Olivia (Livy) and her twin sister, Hailey, were born at 37 and a half weeks after a normal pregnancy. Livy had her first seizure only hours after birth. She was later diagnosed with both multi-focal partial epilepsy and cerebral palsy. During the first trimester, Olivia’s brain did not form properly and she has what is termed cortical dysplasia. 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.

Livy has progressed to where she is today because she has has the support from so many of our family and friends. We are so thankful for the numerous forms of help we have received and are blessed to have an amazing network of people following our journey. As Livy grows, her needs become greater and more diverse. Our medical insurance does not always cover her therapies, equipment, and supplies.

Some examples are:

  • Limited physical therapy sessions. Our goal is to have her sit on her own.
  • Equipment such as a ceiling lift to move her around our home.
  • A replacement wheelchair van in the coming years.
  • Supplies such as diapers and supplements not covered by insurance.

If you would like to offer a gift of support to Livy, you can do so on our Go Fund Me page at https://www.gofundme.com/f/Support-Livy. It takes a village to raise a child with critical medical needs. We truly appreciate and are grateful for your support. We hope you continue to follow Livy’s journey so you can see the outcomes of your generosity.

History

2021

The Present

Livy and Hailey 16

Livy continues to struggle with medical challenges. 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 join us on our social media pages and follow along on our blog.

2015

A Family Trip…Finally

DC Trip

4/11/2015: First time our family left Florida together as a family since 2006. 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!

2014

A Year of Pain

Year of Pain

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

2013

Student of the Month

Student of the Month

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

2012

A Dislocated Hip and Broken Heel

Broken Heal

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

2011

Maturing Too Quickly

Livy 2011

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

2010

Christmas At Home

Christmas 2010

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

2009

Livy’s Second Brain Surgery

Livy's Second Brain Surgery

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

2008

The First Year of School

First Year of School

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

2007

Airlifted to Shands Hospital

Livy 2007

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

2006

Livy’s First Brain Surgery

Livy's First Surgery

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

2005

A Year of Ups and Downs

A Year of Ups and Downs

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

2004

We’re Having Twins!

We’re Having Twins!

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 through 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!

Life With Livy

World Changers

World Changers

Saturday evening, Hailey and I hosted the first ever, Epilepsy Foundation Kids Crew World Changer Celebration. The virtual event honored ...
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The New Livy's Hope

The New Livy’s Hope

When we started Livy’s Hope in 2010, our goal was to tell our story, share information, and help families so ...
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Endless Wishes

Endless Wishes

For years now, when family asks what I would like for my birthday, I don't have an easy answer because ...
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Father's Journey of Hope

A Father’s Journey of Hope

Fatherhood has been both the most rewarding and most difficult experience of my life. I expect that many parents who ...
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Epilepsy Tired of You

Epilepsy, I Am Tired Of You

The other morning, I was reminded all too well just how unpredictable epilepsy can be. Livy began having seizures at ...
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Fathers Stand Against Epilepsy

A Father’s Stand Against Epilepsy

I promise. Two little words that we so often over use. I promise I will wash the car. I promise ...
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