Blog

Livy's Hope Blog

Welcome to the Livy's Hope Blog!
Jonathan Scheinman

A Father's Promise: Making A Stand Against Epilepsy



I promise. Two little words that we so often over use. I promise I will wash the car. I promise I won’t tell a secret. I promise I will be home early so you can go out with your friends. I promise. But what does that really mean? It means a commitment to do something. It means someone trusts you to follow through on your word.

I made a promise to Livy many years ago. It was no small promise and is one that has utterly changed my course in this world. I promised to do whatever I could to help her and to find a cure for epilepsy. In 2009, she was in the hospital with uncontrolled seizures. I sat there watching the nurses put Ativan in her IV. Then I watched as she began seizing again only a half hour later. This went on and on for two months until she eventually received a hemispherectomy; an aggressive procedure that disconnected the left side of her brain. It was her second brain surgery. She continued to have seizure after seizure for another month until we finally regained control. That hospital stay seemed like an eternity. I left the hospital a different person on many levels.

...
Jonathan Scheinman

A Father's Promise

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister's love and a mother's devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so at www.livyshope.com/lemonadeforlivy. And please share with others so that we can spread epilepsy awareness.

...
Jonathan Scheinman

Will You Stand With Us?

This past week, we sent out an email to family and friends. I thought it was important to share since many of you have been following our story from the very beginning. For years, we have watched Livy struggle with epilepsy. We have shed many tears and experienced tremendous heartache as she courageously fought through episode after episode and multiple surgeries. In the end, what Livy needs is a cure.

...
Jonathan Scheinman

A Family's Stand Against Epilepsy



We have no idea what life for our family would be like if Livy hadn't been born with epilepsy. From the moment she took her first breath, she was destined to change what we perceived to be our path in this world. We never knew what epilepsy could do to someone or to a family.

A seizure was something we saw in shows like ER or House when people were in accidents or had brain tumors. We didn't know the statistics such as 1 in 26 people will develop epilepsy or that there are 3 million people in the United States and 65 million people worldwide that have epilepsy or that two thirds of people with epilepsy don’t even know the cause. We didn't know that an estimated 50,000 people in the United States die each year from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. We didn't know.

...
Jonathan Scheinman

I Imagine A Cure

When I look into Livy’s eyes, I know more is going on than there seems to be. She can’t talk or communicate in the typical fashion, but she has her own way of letting us know how she is feeling. Most of the time, we are kissing her and hugging her. So her smile lights up the room. She is just like any kid who feels the genuine love of her family. When she is uncomfortable or hurting, she tells us by her sounds as well as increased seizure activity.

I often put my head against hers and whisper, God, please let me hear what she is thinking. Just this once. My prayers have yet to be answered but if I really listen to her sounds and look at her facial expressions, I can almost get there. Sometimes my imagination gets the best of me. Is she scared or confused. Does she feel lonely or trapped? Does she want to say something but her brain won’t let her get the words out? Does she want to tell us she loves us?

...
Allison Scheinman

PICU vs. Party

PICU vs. Party

Yesterday morning it was becoming pretty apparent that Livy was only getting worse. We have a certain amount of "emergency" medications for seizures we can give her at home before respiratory issues can arise. I had maxed out everything and she only continued to seize. Jon came home from work and we weighed out everything. Hospital stays for Livy are never short when it comes to seizures. I am not talking days but weeks and sometimes months long. We always do whatever we can to put off going as long as possible. We looked at each other and both knew it was inevitable.

The ER stay lasted from just before lunch until after 8pm last night. It had been over two years since we had been there for seizures. All those precious months of control. They did lab test, a shunt series, x-rays and an MRI. The only thing they found was that her sodium was running a little low (128). She tends to run in the low 130s but the dip below could be cause for increased seizures. After consulting with Livy's neuro up at Shands, they decided to start her back up on the seizure med we just finished weaning last month. She was admitted just after 8:00pm.

...

Connect today and join us on
our journey of hope.

 

Facebook Twitter Pinterest Instagram Youtube Contact Us