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Livy's Hope Blog

Welcome to the Livy's Hope Blog!
Jonathan Scheinman

Cyber Monday 2014


Happy Cyber Monday! Hailey has a special message for you. She's designed a new collection of bracelets for the holidays.

Please visit our shop at http://shop.livyshope.com/ and take a look. All of the "Giving Back" projects at Livy's Hope including the Livy's Hope Kids Crew, Livy's Hope For A Cure/Lemonade for Livy, Jewels of Hope and our Care Notebooks are funded by the profits from sales in our store. We are not a non profit so we rely heavily on merchandise sales to continue initiatives which impact many people in the community. Giving to others is what we do at Livy's Hope and with your help, we will continue to improve the lives of children with medical needs and their families.

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Jonathan Scheinman

Don't Give Up. Give Back.


Most of us will face a traumatic experience at least once in our lives. Where we feel we can no longer keep going. Where every day seems like it is a fight just to get through. We wish our days away hoping for an answer. Am I on the right path? Am I strong enough to make it? How will I keep going? We have been in that very same position with Livy a number of times. For years, we didn’t know how we could function in a normal capacity ever again. We were angry. We were heartbroken. We were devastated, confused and lost all at the same time. And most of all, we were so sad for Livy and all she went through.

Our last major hospital stay due to uncontrolled seizures was in April of 2010. It had been a year since Livy’s hemispherectomy operation. We were gradually starting to see her seizures get worse. We asked ourselves, “What are we going to do this time? She can’t have any more surgeries?” Allison called me from the pediatrician’s office since we always follow protocol to make sure nothing else is going on. Shortly after the doctor assessed her, he said, “Get her to the hospital, now!” and off we went.

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Allison Scheinman

Care Notebooks - Gifts to Parents

Care Notebooks - Gifts to Parents

 

As parents of a special needs child, we know firsthand the importance of staying organized and being able to easily locate Livy's history and present day needs. Therefore, Livy’s Hope has created notebooks to help parents and caregivers keep the necessary pieces of their child’s life at their fingertips. These Care Notebooks are a tool to help parents organize important information regarding their child. They can bring this notebook with them to appointments to help share information with their child's doctors, therapists and school.

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Allison Scheinman

"Love The Beach" Bracelet Auction - Art by Hailey

"Love The Beach" Bracelet Auction - Art by Hailey

Hailey is offering an eBay auction on one of her bracelets from Art by Hailey!

"Love The Beach" is available for bidding now at the link below. All proceeds will benefit Livy's Hope.

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Allison Scheinman

Because of You

Because of You

We do what we do because of you. We continue to keep going because you told us we can. We get through and find peace in another day because you stand by us. We are who we are because you encourage us.

We knew we couldn't do this alone so we asked others to help, and they have.

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Jonathan Scheinman

Giving Back

When creating Livy’s Hope a few years ago, our focus was on detailing Livy and our family’s journey through the ups and downs that have accompanied Livy’s medical condition. We have learned so much about ourselves and our views on life. From Hailey’s perspective, this is the way it is supposed to be. She doesn’t know any different. We don’t take long vacations and certainly don’t travel far from home as a family. Our home is our fortress where we find comfort and security in what we know best. When we ask Hailey if she is unhappy that we haven’t done many things families usually do, she answers with a confident, “It doesn’t bother me at all. I love my family the way it is.” She is a remarkable 8 year old. I hope she continues to feel that way as she gets older.

Allison and I often discuss our inability to travel and do certain things as a family. One Saturday morning, not long ago, we were sitting in our kitchen after just having heard an advertisement for Christmas Town at Busch Gardens. Allison got really sad because it sounded like so much fun. But we know for us, it would be too difficult. The last time we took Livy to Disney, she had seizures from the afternoon through the evening. There was far too much stimulation. So I told Allison that it’s true, we can’t do many of the things other families can do. But then I added that we have the opportunity to do something extraordinary. By sharing our story on Livy’s Hope and helping others, we have the chance to change lives and to make a real difference. Spreading hope to a single individual can influence hundreds if not thousands more. It only takes one person to start something great. At that moment, I saw the light shine in her eyes like I haven’t in a long time.

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Allison Scheinman

Adjusting Once Again

We returned home from the hospital last Friday. Livy was pretty stable regarding seizures and the doctor thought it best she get away from all the lovely hospital germs. She has being doing relatively well. We are back to the fun adjusting medication game now that she came home on two additional seizure meds. We keep telling ourselves this is only temporary. For those of you that have gone through this, it is one of the most frustrating things, going up on meds, weaning down meds, and then going up again. Trying to find the perfect balance of not too much and not too little. These meds all have so many side effects and require other meds to control them. We've become quite the pharmaceutical experts over here.

Livy has been home from school and we have decided to keep her home until her cast comes off the week after Thanksgiving. She is also scheduled to have her Supprelin implant replaced the week of Thanksgiving. For those of you not familiar with the implant, here is a link to some information: Supprelin Implant

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Jonathan Scheinman

Finding Hope Around The World

Finding Hope Around The World

Livy's Hope has begun a new initiative: Finding Hope Around The World. The goal of Finding Hope Around The World is to uncover as many stories of hope from as many countries as possible. When we were discussing the concept, we thought it would be a good idea to have a theme song. So we put the word out on facebook to see if anyone had some contacts in the music industry who would be willing to help. A friend from high school responded that she may be able to help. And help she did. She introduced us to Carmen Magro, a musician from Philadelphia who I wrote about in a previous post. Carmen was more than willing to work with us to write and record an amazing song that really gets to the heart of having hope.

The name of the song is I Am Hope. The basis for I Am Hope is derived from a poem I wrote called My Name Is Hope. Since I am more of a poet than a song writer, Carmen used the basic premise of my poem and incorporated it into his song. We couldn't be happier with what he has created. We really feel the power of music when listening to his song. It will be a major part of Finding Hope Around The World and we intend to incorporate I Am Hope into a video in the next couple of months.

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Jonathan Scheinman

Livy's Hope: A New Direction (Revised)

Our apologies if some of you received two emails. We were having some technical issues which stopped some notifications from being sent. We also revised part of this post to more adequately convey our message.

Over the last year-and-a-half, we have been blessed by all of you, our amazing supporters. You have been generous with your financial contributions to help with Livy’s therapies through donations and purchases of Hailey’s jewelry. Livy would not be where she is today without our whole team of followers. You have also given us emotional support through your kind words and heart-felt comments. You have proven to us that providing inspiration and hope can go a long way in helping someone get through a difficult time.

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Jonathan Scheinman

Livy's Hope: A New Direction

Please click here to read Livy's Hope: A New Direction.

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