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Livy's Hope Blog

Welcome to the Livy's Hope Blog!

Good Sisters Article

Good Sisters Article

The article about Hailey and Livy has been posted on the Tampa Bay Times website. There are also videos and slideshows on the page as well. We are so impressed with the wonderful job Rebecca Catalanello and Melissa Lyttle have done with the story of our girls. It is remarkable how much detail they captured and how well they got to know our family.

We are so excited to see it in print tomorrow! Please click the link below to read:

http://www.tampabay.com/features/humaninterest/article1240117.ece

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Guest — Rose Egnacheski
Good Afternoon Jon and Allison, I saw the beautiful article online today as I am out of town visiting my parents & my sister who h... Read More
Sunday, 15 July 2012 13:19
Guest — Gary Parrish
To the Scheinman family, Livy's story has truly touched my heart. What a gift she is sharing with the world in her own special wa... Read More
Sunday, 15 July 2012 17:25
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Tampa Bay Times Feature Article

Tampa Bay Times Feature Article

The Tampa Bay Times is going to be featuring a story about Livy and Hailey in this Sunday's paper (July 15). Our family has been followed by one of their reporters and photographers for the past five months. They became interested in the story of our girls when they heard about Hailey's Young Hero award.

For our local friends and supporters, check out this coming Sunday's Floridian section of the paper. We will be sharing a link on this blog to the story for our "out-of-town" friends and supporters as soon as we have it.

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Family Cafe Conference 2012 Presentation

I was finally able to finish putting the video together of our presentation at the Family Café Conference. I broke it into 4 parts since it is rather lengthy. We had a wonderful experience and met some great people. They must be great if they were willing to listen to us for an hour:) Hailey did an amazing job and was incredibly poised in front of everyone. After watching the videos, anyone familiar with the movie Monster's Inc. will understand the joke regarding Hailey and Mike Wazowski. For those of you who do not know about the Family Cafe Conference, it is an annual event held in Orlando that brings together individuals with disabilities and their families with state agencies, non-profit organizations and other service providers, so families can network with each other, learn what services are available to them, and find out the best way to go about accessing those services.

Our presentation as it appeared in the program was:

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Guest — Ms. Mary Jo
Wonderful! You guys did a great job! Miss you, Livy, but it looks like you are having a good summer!
Monday, 09 July 2012 10:40
Guest — ainsley walling
H, you guys did great! I couldn't wait for you guys to get home... love,ains... Read More
Saturday, 14 July 2012 09:47
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Talk of Summertime

Talk of Summertime

Summer is in full swing and we are all keeping very busy. Livy has been attending the ESY (extended school year) program at her school. It is a shortened day and only four days a week but it allows her to keep working on her skills so they are not lost over the summer break.

We had a wonderful presentation at the Family Cafe in Orlando! We were a bit worried about Livy because the day before she woke with a long seizure and slept most the afternoon. But it all went off without a hitch and she did beautifully. Jon is working on the video and hopes to have it up soon. It was a very positive experience for all of us and we met some wonderful people. Hailey had a blast the entire weekend. We hope to do this again next year.

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Guest — Lisa
Same with my daughter..I'm thankful for the good days..sometimes just the good moments. Beautiful picture of beautiful girls!... Read More
Thursday, 05 July 2012 13:14
Guest — Melissa Surprenant
Glad to hear she is eating a bit by mouth. Frosting and fun stuff like that must make her smile! Can't get that through a mic-key.... Read More
Monday, 16 July 2012 16:49
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"Art by Hailey" Note Card Set

"Art by Hailey" Note Card Set
We have reproduced some of Hailey's most popular paintings on note cards. The set of eight note cards and envelopes costs $15.00 and comes wrapped in pink rafia with a charm (charm may vary). Shipping and handling is free when shipped to the continental United States. It is a perfect gift to let someone know you are thinking about them or keep them for yourself to send a little bit of hope. All of the proceeds from sales go directly toward Livy's therapy sessions. To purhase your note card set on ebay, please click here. Or, if you would prefer to order outside of eBay, please email us at This email address is being protected from spambots. You need JavaScript enabled to view it.. Thank you for your support!
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Guest — Kathy
I bought the cards and they are wonderful!!! I know I will use them up quickly, but I intend to send them only to special people... Read More
Tuesday, 03 July 2012 17:50
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Summer Solstice Bracelet Auction

Summer Solstice Bracelet Auction

Hailey has created another bracelet just in time for Summer. Please click here to bid on "Summer Solstice". Thanks very much and happy bidding!


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Windows

Parents of children with disabilities have been entrusted with unusually challenging situations. Most if not all at one point or another have woken up one day and thought, "How am I going to keep doing this?" We often ask ourselves during extended hospital stays, "How did my life get to this point?" When Allison and I were at Shands Hospital in Gainesville during one of Livy’s many long stays, I used to look out the window at the road leading away from the hospital and imagine just driving off into the sunset. When we were at All Children’s Hospital in St. Petersburg, I would look out the window at the cruise ships passing by and think, “Those people are so lucky. They are going on vacation and don’t have a thing to worry about.” Believe me, I was so jealous. When we were at restaurants, I would watch families walk by, the kids running and jumping, full of smiles. Every family seemed to be the perfect family. And how easy I bet they had it. They could fly somewhere for a vacation or go to Busch Gardens and not have to worry about seizures or medications or if their children would ever walk or talk.

It took quite a while for me to finally look through a different window. I started by looking at Livy. Her eyes and smile are windows into a life that is pure and a source of unconditional love. Hailey’s personality is a window into how Allison and I deal with Olivia’s situation. Kids look through the windows of their parents’ experiences to try to make sense of the world. Hailey has learned so much about life in such a short period of time.

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Guest — Deborah Telles-Palladino
As always, your words are moving and inspirational. The family has been through so much and always with such grace. As you say... Read More
Wednesday, 27 June 2012 20:54
Guest — Gary Parrish
What a powerful blog post... I greatly admire your honesty and your courage! I know it comes from, and is for, Livy. She wisely ch... Read More
Wednesday, 25 July 2012 22:47
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I Am Livy

We would like to extend a big welcome to our new friends that attended our presentation at the Family Café Conference on June 16th in Orlando. Thank you so much for taking the time to listen to what we had to say.

I don’t know what it feels like not to be able to speak or to communicate how I am feeling. What if I was in distress but couldn’t tell anyone where it hurt? What if I was hungry or thirsty but couldn’t form the words food or water. What if I simply wanted to say thank you or I love you but my body didn’t allow me to vocalize it or use sign language to express it?

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Guest — Paige
Ivan and I love this video. We feel Livy's strength and hope when watching it and we know how incredible her family already is---... Read More
Tuesday, 19 June 2012 09:52
Guest — Carol Lee
So beautiful, it moved me to tears. many hugs, Carol
Tuesday, 19 June 2012 10:38
Guest — Joanna Cavanaugh
I appreciate all your beautiful videos and to see what ALL of you have done,not just for Livy ,but for all of us only able to view... Read More
Thursday, 21 June 2012 20:29
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Bath Time For Livy

It is always a challenge giving Livy a bath. She is getting heavier and longer and outgrowing our current set up. This video will show you how we lower her into and lift her out of her bath chair. We have discussed various possibilities with a contractor to add on a bathroom that will accomodate her for years to come. We would be able to roll her bath chair in and out of a shower or use her lift to put her in her chair. At this point, Livy is the only one who looks forward to bath days. But since she is happy during and after, we are happy too. Enjoy and thanks for reading!

If you would like to subscribe to the Livy's Hope Blog, click Subscribe to blog at the top of the page and enter your name and email address. Whenever we create a new blog, you will be notified by email.

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Guest — Carol Lee
Thank you for sharing this part of your/Livy's day. lots of hugs, Carol
Tuesday, 12 June 2012 01:19
Guest — stavria
You can get a leg extension piece for the bath chair so you don't have to lower her down into the tub. It will make a world of dif... Read More
Tuesday, 12 June 2012 10:36
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A Petal's Wish Bracelet Auction

Hailey has created another bracelet in support of Livy's therapies. She finished beading the bracelets requested as a result of the Bay News 9 interview and got right down to something new. Please click here to bid on "A Petal's Wish". We are working on a video to show Livy in action during her last therapy session so stay tuned. Thanks so much for following Livy on her journey.

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Video of Hailey and Livy On Bay News 9 June 4, 2012

Here is the Everyday Hero video of Hailey and Livy on Bay News 9 for those of you who were not able to see it. Allison and I had such a wonderful day and we were so humbled by the outpouring of support.

Hailey also had a great day. She was able to watch the video on TV in her classroom with her friends. I still don't think she completely understands the significance of all she has done. As she says in the video, she does it because she loves her sister. Her devotion at such a young age is amazing and she wears the title of hero with grace and humility. We can only hope that as she gets older, she continues to exemplify the qualities she has exhibited toward Livy thus far.

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Recent Comments
Guest — Paige Spencer
We always turn on channel 9 when getting ready in the morning. Yesterday, I flipped on the TV and there was Hailey! She brought ... Read More
Tuesday, 05 June 2012 06:07
Guest — Melanie Quinton
I am so thankful to have come across your story. I love to open my email and see an update to the blog! Thanks for making my day a... Read More
Tuesday, 05 June 2012 08:25
Guest — Carol Lee
I'm so happy about the recognition for Hailey and your family and, of course, for sharing her story with others who may want to he... Read More
Tuesday, 05 June 2012 09:47
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Exciting Day and Hailey's New Artwork

Good Morning! It has been a very exciting day for our family. Hailey and Livy are being featured on our local news station BayNews9. They nominated Hailey as an Everyday Hero and the segment is airing :53 minutes past the hour every hour today! The story is also featured on their front page news:  http://www.baynews9.com/ The story is titled: HERO: Girl Raises Money for Disabled Twin Sister.

We will be posting the segment this evening for those of you out of the area and who do not have Brighthouse. Hailey's teacher had it on for the class today as well so I am sure Hailey was enjoying her moment.

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Guest — Carol
Wonderful news! I'm still watching for an extensive article in the Times...hugs,
Monday, 04 June 2012 14:12
Guest — The Palotas Family
We are so happy we saw this story on Bay News 9 today! We've shared the story and a lot of videos with our kids, which they love.... Read More
Monday, 04 June 2012 16:41
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Road Trip To The Project Store

It seems as though our second home is Michaels or Joann Fabrics, also known as the "project store". We make many visits to the project store so Hailey can pick out the beads she needs to make her bracelets or to purchase the paints she uses for her paintings. On this outing, we wanted to take everyone along so you can see how Hailey selects her beads. She has a great eye for colors and patterns and is able to assemble a bracelet in her mind before actually putting it together.

We are so proud of her for taking the time to do this for her sister. She still doesn't realize the magnitude of what she is doing or the impact she is making. She would say she does it because she loves her sister and she wants to be with her family. I can't think of any better reason.

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Guest — Palotas Family!
That was awesome, thanks for sharing ! Thanks for sharing. We think that it's amazing what Hailey is doing and can't wait to get... Read More
Monday, 04 June 2012 10:22
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Hailey's Lemonade Stand

We wanted to let everyone know that Hailey will be holding her first lemonade stand event on Sunday, May 27th from 2pm - 5pm at our house. She is having a sports themed stand and will be selling lemonade and various baked goods. If you have a chance, please stop by. Please email us at This email address is being protected from spambots. You need JavaScript enabled to view it. if you need directions. Hope everyone has a great holiday weekend!
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Lemonade For Livy 2012

The Lemonade For Livy 2012 fundraiser starts this Saturday, May 26th and runs through Sunday, August 26th. We had a lot of fun last year with great participation. We are hoping to make this year bigger and better. The kids who created stands did a wonderful job and really looked forward to selling their lemonade. They all learned a valuable lesson in helping others in addition to competing for the most creative stand. We had some adults participate as well so there are no age requirements to enter a stand. For more information about dates and supporting materials, please click here.

Hailey is really excited about setting up her first stand on Sunday, May 27th. To get the word out and to demonstrate some creative themes, she helped us make this entertaining video. She was such a great sport. She required little direction with the scenes and came up with almost everything on her own. The unconditional love she shares with her sister truly shines through. We are so proud of her for all of her selfless acts of kindness. Please take a moment to watch and share with as many others as possible. The direct link to the video on YouTube is http://www.youtube.com/watch?v=8vS9FoqrmSc if you would prefer not to share the blog link.

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Guest — Connie L
I love it, that was sooo beautiful, can't wait to share it. You continuosly touch our lives even though we are so far away. We a... Read More
Wednesday, 23 May 2012 00:13
Guest — Carol Lee
This video is precious--and very entertaining! hugs, Carol
Wednesday, 23 May 2012 15:04
Guest — Di Di
Amazing! The very talented Hailey and Livy!
Wednesday, 23 May 2012 21:02
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A Yin and Yang Week

Mother's Day weekend was a lot of fun. The four of us went out to lunch to one of our favorite restaurants in Safety Harbor called Green Springs. The girls and I got Allison a chiminea for our back yard and she was so excited. She has always wanted one. That night, we sat under the stars and toasted marshmallows. It was a perfect day. On Sunday, we enjoyed brunch at my in-laws' house. Mimosas and Bloody Mary's were flowing along with a full spread of appetizing breakfast delights. Another great time had by all.

Monday, when I got home from work, I was greated with the amazing news that Livy had rolled over to her stomach. Allison snapped this picture to capture the moment. Livy hadn't done this in over a year so it was a big deal!

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Guest — Carol
What wonderful news, and such sad news--you are right about the ying and yang. She looks so triumphant on the mat! A day at a time... Read More
Friday, 18 May 2012 09:34
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"Sea Wishes" Bracelet Auction

This is Hailey's last auction before Livy's intensive therapy starts next week! Please click here to bid on "Sea Wish". It reminds me of a day on the beach. Thank you all so much for supporting Livy. We are hoping for a very successful session and will be sure to keep you all updated.

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The Middle Seat

Today I was picking Livy up from school and on the way home I came across a radio station I never really listen to. I heard a very interesting sounding woman telling a story during a segment of her message "Sportin A Tude". Her name is Patsy Clairmont. Patsy is an author and speaker and offers spiritual and emotional hope to those in need.

Her story was about a plane trip she had taken. She realized that the only seat left on the plane was a middle seat. The last thing she had wanted was to have to sit between two people for the trip. No one really seems to like the middle seat. But, we have all been there and we know it has its problems. That is why my mom taught us early on to get a letter "A" on Southwest!

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Guest — Ronda O'Brien
What a great way to look at it, like my fall, it could'be been so much worse yet I was given the middle seat and I have pain but s... Read More
Friday, 11 May 2012 16:42
Guest — Aunt Cindy
What beautiful thoughts!!!
Friday, 11 May 2012 20:37
Guest — Marlene Hefferman
Your eloquence is equaled only by your wisdom, Allison.
Saturday, 12 May 2012 10:48
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Visiting Winter The Dolphin

After watching the movie A Dolphin Tale, we decided to take the girls to the Clearwater Aquarium. For those of you who have not seen the movie, A Dolphin Tale is the story about Winter, a dolphin who lost her tail after getting caught in a crab trap. Winter was nursed back to health at the aquarium where she was fitted with a prosthetic that enables her to swim. She became an instant sensation and inspiration to many of those with disabilities. People from all over the world travel to see her and to experience her amazing story.

While at the aquarium, we saw Winter and had a close encounter with her friend Hope. Both the girls really enjoyed the experience. Dolphins are amazing creatures and Winter's will to live and persevere is an example for us all to follow.

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Welcome Blog

Welcome to the new and improved Livy’s Hope blog. A big welcome to all of you who were following Livy’s progress through the CarePages website. We hope that you will continue to follow Livy’s progress and all that we do to support her. In order to make our blogs easier to maintain, we have decided to combine the Livy’s Updates, Inspire Me! and Art By Hailey blogs into one overall Livy’s Hope blog. We intend on creating more entertaining videos, detailing inspiring stories and keeping you better up to date on Livy’s progress.

Many of you have told us “I don’t know how you do it.” The truth is, we could not do it without the love and support of so many. The encouragement and caring from all of you inspire us to stay positive and to keep us moving forward. We hope you will continue to visit us at Livy’s Hope and share our story with others. We are only just beginning in our quest to educate, advocate and inspire!

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Guest — Carol
Hi, glad to be with you here! hugs,
Monday, 07 May 2012 16:50
Guest — Jon
Hi Carol...so happy to have you here. Thanks for visiting!!
Tuesday, 08 May 2012 23:05
Guest — BRAD STROHECKER
JUST PURCHASED A BRACELET READ YOUR STORY IN THE PAPER NOW WATCHING VIDEOS.IM A 52 YR OLD MALE I HOPE BEFORE I DIE I CAN BECOME HA... Read More
Monday, 16 July 2012 01:44
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