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Livy's Hope Blog

Welcome to the Livy's Hope Blog!

Hero Mom

On December 15th, 2004 in St. Petersburg, FL, I not only saw the birth of my twin daughters Hailey and Livy, but I was also witness to the beginning of a journey for a remarkable mom. Hailey was born first and was a very healthy, typical baby. Livy had different plans in store. A little more than an hour after birth, Livy had her first seizure and went on to have several more seizures that day. The four of us flew to Boston for some specialized care at Boston Children’s where Livy was eventually diagnosed with a brain malformation. While Livy was at the hospital, Allison spent every day with her. I flew back and forth on the weekends but only dealt with a portion of what Allison dealt with; the endless parade of doctors, nurses, medications and foreign medical terms. It was so bad at one point, they asked us if we wanted to sign a DNR (do not resuscitate). She was a new mom with twins who was supposed to be relishing in the birth of her girls, not deciding what treatment to try next for something we knew nothing about. She lived two different lives; getting to know Hailey as a newborn when outside of the hospital and not knowing if she would ever be able to truly meet Livy.

Our family was finally reunited for good in September of 2004. Livy’s path home took her back to All Children’s Hospital in St. Petersburg and then through a nearby Hospice house. Over the next four years, there were frequent hospital stays, doctors’ appointments, therapy sessions, insurance battles and two major brain surgeries. The second procedure disconnected the left side of her brain in an attempt to stop the 100 plus seizures she was having per day. Since her second surgery, Livy has done considerably better. However, she is a very complicated child who requires full time care for all of her needs. Allison made the decision that she would be the one to take care of Livy. I remember her saying on multiple occasions, “No one will take care of her like I will.”

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Guest — Linda Maegdlin
What a beautiful tribute to a BEAUTIFUL woman!
Friday, 09 May 2014 10:06
Guest — Carol
Much love to you, Allison--and to those you love.
Friday, 09 May 2014 15:23
Guest — Deborah Telles-Palladino
Jonathan: You wrote a beautiful tribute to Allison and it is so well-deserved. She stands head over heels over most others and I... Read More
Friday, 09 May 2014 10:50
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Livy's Hope Kids Crew Fundraiser

The kids from the Livy's Hope Kids Crew are raising money to help fund 80 gifts they will be putting together on April 26th to give to the moms staying at the Ronald McDonald House Charities of Tampa Bay on Mother's Day. 

Please consider making a donation to help fund their wonderful efforts! Each gift bag will contain items such as a handmade gift, body lotion, lip balm, a manicure set, body spray and a delicious cake pop by Painted & Sprinkled!

The more the kids raise, the more they will be able to add to the gift bags. With your help, they will be able to show these moms that they are cared about as their children are in the hospital.

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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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Guest — Vera "Meme" Lane
You, Allison and my beautiful granddaughters continue to be an inspiration to all who know, AND LOVE, you!
Monday, 31 March 2014 20:50
Guest — http://bonnevivantelife.wordpress.com/
Thank you for sharing your brutiful brave!! Your strength is inspiring!
Tuesday, 08 April 2014 15:15
Guest — Laura
Thank you for your story. "Don't give up--give back." I will remember that.
Friday, 18 April 2014 16:26
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Are You Wearing Purple For Someone Today?

Today, March 26th, is World Wide Purple Day, 2014. It is a day when people from around the world don their purple to support those with epilepsy and to raise awareness. It is a day when we remember all those who have lost their battle with the disorder. For those warriors that continue their struggle each and every day, we want you to know that you are not alone and that we will fight with you.

Livy was up early this morning at 7:15. I let her know that it is Purple Day and that I am wearing purple for her. I reminded her that I will do everything I can to help her and that I will always be there for her when she needs me. I made that promise to her years ago and it is one I will keep for as long as I am living. I also told her that I am wearing purple today for her friend Taylor and her family who are currently having a very difficult time. Her friend Georgie and his family who have been through so much. Her friend Gabe and his family who deal with dozens of seizures daily and her friend Anna and her family who struggle every day.

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Are You Ready For Purple Day - March 26th?

Are You Ready For Purple Day - March 26th?

Join us on March 26th - A World Day for Epilepsy Awareness!

Purple Day was started by a little girl named Cassidy who struggles with Epilepsy. "Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone."

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They Are The Champions

They Are The Champions

I spent this past week with Livy at another intensive therapy session. In the past, she was able to endure the typical three week course but we have had to scale down to one week at a time. She was fatiguing after about a week and half and with the exhaustion came increased seizures. No thank you.

This week we met a very cool kid who was going through an intensive session as well. I have seen many kids endure these very difficult workouts and each time I find myself in awe. We are talking three hours a day, five days a week for three weeks straight. I see the pain in their faces and hear the ache in their voices. These kids are pushed to their limits to do the simple tasks so many of us take for granted.

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Guest — Poppi
Bless you guys for all the love and caring. Poppi
Friday, 07 March 2014 16:42
Guest — Becky
those kids are my heros!!!!
Friday, 07 March 2014 17:03
Guest — Gary Parrish
Livy's strength and the way she touches my heart is such an inspiration to me. What a gift she is!
Friday, 07 March 2014 21:41
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Pedis, Hips and CBD

Pedis, Hips and CBD

A long overdue update on our little sweetheart.

The past few months have been pretty stable for Livy. She continues to have some rough patches but they are short lived and manageable. We can't believe the girls turned nine in December. And with each year comes new challenges. As Livy grows, it becomes more difficult for her to keep up with the weight of her body. This makes the task of trying to sit up a big feat. We continue to encourage her to use her arms to hold her up but she resists using her left arm and hand. To this day, the only thing she will hold onto in that left hand is another hand or finger. Maybe just the human touch is all she prefers (or all that she can tolerate).

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Guest — Cindy and Jim Karwowski
Your updates are wonderful - informative and upbeat. God placed your two special daughters perfectly when He chose you and Jon.... Read More
Thursday, 30 January 2014 19:03
Guest — Andrea Guarino
Thank you both for sharing this wonderful update. I will vote as long as I have to for the legalization of medical marijuana becau... Read More
Thursday, 30 January 2014 19:40
Guest — Gary Parrish
Thank you so much for the update! I love hearing how she is doing! As always, I will continue to think of her and pray for her. I ... Read More
Thursday, 30 January 2014 20:30
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This Ending Is Only The Beginning

This Ending Is Only The Beginning

What an amazing year it has been! We never could have imagined we would have been able to accomplish all that we did in one year's time. The last few months were particularly busy and seemed to go by in a flash. Livy's Hope has made such a difference in our lives and we hope in the lives of others as well. I have a feeling this is only the beginning of something bigger and more inspirational.

We are excited to share with you that our video "I Am Hope" for the Livy's Hope For A Cure campaign has been chosen as a finalist for the WEDU Be More Awards! The ceremony will be held on February 20th in Tampa. This is a wonderful honor and we are so proud to be among the finalists.

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Final Days for Holiday Shopping at Livy's Hope!

Final Days for Holiday Shopping at Livy's Hope!

Are you still looking for that special something to give? Choose from a variety of bracelets by Hailey, a Livy's Hope ornament, Art by Hailey stationary or a Livy's Hope Kitty. Any gift you give is a gift that keeps giving. All proceeds benefit the programs of Livy's Hope.

Tomorrow, December 19th is the last day to order gifts from the Livy's Hope shop in order to have them arrive in time for Christmas!

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"Believe In Hope" Original Painting - Art by Hailey

"Believe In Hope" Original Painting - Art by Hailey

"Believe In Hope"

Hailey has created this festive holiday painting to raise money for Livy's Hope!

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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?

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Guest — Jim and Cindy Karwowski
Your thoughts are so beautiful and God-inspired.
Friday, 18 October 2013 10:34
Guest — Carol
My heart is still with you...hugs,
Friday, 18 October 2013 11:41
Guest — Jim and Cindy Karwowski
Your thoughts are so beautiful and God-inspired.
Friday, 18 October 2013 10:34
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Lucky Friday The 13th

Lucky Friday The 13th

I am still amazed by the fact that it only takes a simple smile or a kiss to bring me back to when Allison and I first met. After 15 years of marriage and a total of 18 years together, it is easy for one to forget what it was like all those years ago. But we like to keep those memories alive. We still reminisce about what we did before having kids. What did we do with all our free time? Life was so simplistic back then. But what we realize is that our lives now are much more full of love and purpose than we ever thought possible.

This year has been especially crazy. Just living life, working and Hailey and Livy’s daily schedule (especially all Livy’s doctor’s appointments and therapy sessions) can be hectic. But we have also been running our Livy’s Hope For A Cure campaign along with our regular Livy’s Hope work. Not to mention, our house has been undergoing renovations to make it more handicap accessible. Allison has often said that if we don’t kill each other by the time this is all done, it will be a miracle. As we are finding out, it takes an amazing commitment to run a six month fundraising campaign.

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Guest — Karen
Happy Anniversary to both of you. May you have many more loving and blessed years together. Best, Karen Jacobs... Read More
Friday, 13 September 2013 18:11
Guest — Vera Lane
Jon, this is a beautiful tribute to Allison! You are so lucky to have each other and the world is a better place because of both o... Read More
Friday, 13 September 2013 18:37
Guest — Diane Scheinman
Jon, as we always say you should be a writer. You said it all and so clearly we feel the love and commitment between you and for y... Read More
Friday, 13 September 2013 19:10
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Holding Back On Big Expectations

Holding Back On Big Expectations

Change can be a really good thing but it can be difficult too. This time of year brings on a change in all of our lives. So much excitement and build up for the first day of school. The night before, outfits are put out, backpacks are ready to go, lunch is made and we all imagine how the next day will play out. Hailey was bundled with excitement especially having learned she is in the same class as her best friend for the fourth year in a row. She had missed school a lot and was eager to get settled back in. I think the night before the first day of school is like Christmas Eve to her. This makes me so happy, I love that she loves school. Jon and I don't remember having been that eager!

As parents, we always wish for a great start to the new year. After we drop our kids off, we pray the day goes smoothly. We hope our kids like their new teacher, that the kids are nice, and that something fun and memorable happens that day. We will badger our kids with questions when they come home, trying to recreate their day in our minds.

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Guest — travelswithtessie-toodles.blogspot.com
Yes. Exactly. I can so totally relate to what you are feeling. Prayers for Livy to have a better day! ... Read More
Tuesday, 20 August 2013 11:20
Guest — The Cottons
We hope today is a better day for Livy, and we wish Hailey a fantastic start to the school year!
Tuesday, 20 August 2013 11:21
Guest — Margie
Hugs to all of you ... I hope today is much better...
Tuesday, 20 August 2013 12:38
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Art Auction by Hailey "Summer Breeze"

Art Auction by Hailey "Summer Breeze"

August is the month of AUCTIONS for Livy's Hope For A Cure! We are asking people to create something original or find something they no longer want and auction it on eBay or sell it at a yard sale. Then, donate the money to help fund epilepsy research. 

Hailey has created this beautiful landscape of the Gulf of Mexico viewed from Dunedin, FL. The bidding begins today and ends in three days. Don't miss your chance to win this artwork and at the same time help the Epilepsy Foundation to fund research for a cure! Click here to visit the auction.

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Guest — Susan sullivan
Very unique painting done bt Hailey,I paint also, she is good. Good luck with the bidding.
Thursday, 08 August 2013 22:31
Guest — janet n
Thank you! This is very interesting and useful information. http://www.policeauctions.com/... Read More
Friday, 27 February 2015 13:43
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Hailey's HOPE Necklace - Ending Soon!

Hailey's HOPE Necklace - Ending Soon!

There is just over one hour left to bid on Hailey's latest jewelry design (Auction ends at 3:00 PM EST). Click HERE to BID NOW. All proceeds benefit Livy's Hope. Thank you and have fun bidding!

"HOPE" Necklace

  • Black Beads
  • Silver Spacers
  • "HOPE" Letter Charms
  • 19" beaded on wire
  • Silver Magnetic Closure
  • Designed by "Art by Hailey" - Hailey is Livy's twin sister
  • FREE SHIPPING
  • www.livyshope.com
  • Proceeds benefit "Livy's Hope"
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Guest — Sterling Silver Celtic Necklace Sale UK
Really wonderful post your have shared here
Friday, 30 September 2016 07:53
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$50 Gift Card Giveaway to Coolhubcaps.com!

$50 Gift Card Giveaway to Coolhubcaps.com!

Livy's Hope is having a great GIVEAWAY!

Coolhubcaps.com sells really cool wheelchair accessories. They have donated a $50 gift card to use on their website! In order to enter the giveaway, go to their website: http://www.coolhubcaps.com/ and comment on our Facebook page what your favorite hubcap design is and why. 

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Guest — Carol
Cool idea! Hailey, I love the pink bracelet and purple shirt! hugs,
Thursday, 27 June 2013 16:29
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You're Kidding Me...Right?

I looked down at Hailey's face as she peered up to me with very serious eyes. Her point was clear. We were going to raise $1 million dollars for the Epilepsy Foundation. "You're kidding me...right?" I asked. She wasn't kidding and she was going to make me believe it. Jon and Hailey asked, "Can we count you in?"

A lot of people are going to think we're crazy. I know this because I thought Hailey and Jon were crazy when they told me what we were going to do. At her age, she does not understand the concept of $1 million dollars. But Jon, he knew what he was getting us into. He and Hailey always talk about grand schemes and outrageous ideas. They talk about inventions, business ideas, ways to combine foods. They are dreamers. They are believers. They are the kind of people that think anything is possible.

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Guest — Suhail Bury
Wow! That's amazing! Hailey is such an example. I encourage my kids to help with fundraisers and I had shown Nathan some of Hailey... Read More
Thursday, 13 June 2013 09:12
Allison Scheinman
That is wonderful that Nathan has been inspired to do a fundraiser! Kids are so amazing. They have so much strength and will and a... Read More
Thursday, 13 June 2013 09:30
Guest — Gary Parrish
Great post, Allison! Just a small glimpse into the pain and heartache that you all have been through and it touches my heart. I ha... Read More
Thursday, 13 June 2013 09:28
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Livy's Hope For A Cure

It’s 8:00 on the morning of December 15, 2004. I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg. I am haggard with red eyes and a dazed, confused look about me. This should be the happiest day of my life. I am a first time dad. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy) only 4 hours earlier. Instead, tears of grief, not joy, stream down my cheeks. I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. We would later be told by a doctor that she may not live to be a year old.

After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were asked if we had considered a DNR (do not resuscitate). Livy’s condition worsened so we baptized her in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia (a brain malformation). Remarkably, three months later and with Livy subdued on five anti-seizure medications, we flew back to Florida to All Children’s while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both physically and emotionally to care for such a medically complicated child.

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Recent Comments
Guest — Harold Lampert
Beautiful video; you guys are amazing!
Friday, 31 May 2013 11:42
Guest — Carol
Jon, I'm sure I won't be the first one to suggest you write a book. You are gifted... I'd like to buy a campaign t-shirt but didn'... Read More
Saturday, 01 June 2013 09:55
Guest — Carol
Oops! Just found the shirt--hugs,
Saturday, 01 June 2013 09:55
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True Happiness Is To Enjoy The Present

True Happiness Is To Enjoy The Present

Just the other day, I finished listening to the CD book "Knowing Jesse" by Marianne Leone Cooper (the wife of actor Chris Cooper). It is an incredible story about their son Jesse. Jesse suffered a cerebral hemorrhage at birth that resulted in Cerebral Palsy and Epilepsy. Sadly, he died from SUDEP (sudden unexplained death in epilepsy) at the age of 17. The ending was beautiful and inspiring and I was sad to have it come to an end. And then, as though someone knew I was still in need of inspiration, a great story came on NPR.

It was about two men, Ben Harris and Scott Haren, both who suffer from ALS, the degenerative disease also referred to as Lou Gehrig's disease. These two men have been trying different experimental medications to treat themselves. They both realize they are coming close to the ends of their lives, but they have incredible perspectives. Although these experiments may not have completely worked, Harris does not look at them as failures because he is able to share the information with other ALS patients and they may one day be able to benefit from what he learned. Haren tries not to focus on the things that he can't do but the things he can do.

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Guest — Carol
Alison, thank you so much for sharing this with us. Life's focus is what it's all about. I am so impressed with your focus on you... Read More
Friday, 24 May 2013 15:18
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Days Worth Remembering

Days Worth Remembering

OK, it's a tough one...what lights up your eyes more, that smile or those socks?

It's time for an update! We have been busy all wrapped up in a very exciting project that we will be sharing with you all shortly. It's a good one, and we can't wait to share it with the world. Stay tuned...

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Guest — Jeff
Smile-#1 Socks-#2!!
Thursday, 16 May 2013 11:56
Guest — Carol
Allison, she looks wonderful! What a doll...hugs,
Thursday, 16 May 2013 11:57
Guest — Joanna Cavanaugh
Have toagree that SMILE is # 1 and the socks are # 2 ! What a great gift !
Thursday, 16 May 2013 14:51
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