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Livy's Hope Blog

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Jonathan Scheinman

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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Allison Scheinman

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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Allison Scheinman

"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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Allison Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Allison Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

A Yin and Yang Week

Livy Rolling

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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Allison Scheinman

"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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Allison Scheinman

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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Jonathan Scheinman

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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Jonathan Scheinman

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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Allison Scheinman

One of Those Days

Today was going to be a better day. Hailey and I are both feeling better now finally getting over a stomach bug. I was rushing around trying to get myself and the girls ready to go. Hailey was staying home from school one more day and I was going to drop her off with my parents.

We found out that Livy was getting the Student of the Month award today at the school assembly! I was excited about bringing her in and watching her go up to get it. Just as we were about to leave, I noticed Livy was starting a seizure. No, not now Liv. I waited to see if it would stop and tried calming her down and maybe get her to fall asleep. Sometimes that helps to stop the cycle. But, no luck. I had to give her some medication to stop it and she finally fell asleep.
I felt so sad, so disappointed, so angry. Most days when she is having a seizure I can accept it and move on. Some days are different though. I just wanted today to be a special one. Why couldn't it just be normal? I was a mom just looking forward to a special day for my daughter.
Our family has learned to be very flexible. Each day is a mystery around here. We never know what to expect. Jon told me that our life isn't just the norm - one that goes on at a normal, not so thrilling pace - but one with great highs and lows. I asked Hailey if it ever bothers her, the way our life is different. "It's not different to me", she says. She put her little arm around me and said, "Isn't it cute how Livy is snoring right now?". I just smiled.
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Allison Scheinman

Long Time No Blog

I am just realizing how long it has been since I have updated this blog! I tend to use Livy's CarePages and Facebook for updating and was having trouble posting blogs using my other computer. Now I intend on keeping this blog more up to date.

We have come a long way since Livy's fall at school. It was a difficult time for all of us. I kept Livy home with me for just about four months. Our first priority was getting her better. She needed time to heal and had a very difficult time with sleeping. She had some regression physically and is just now about back to where she used to be.
Jon and I consulted with a special needs attorney and advocate regarding her return to school. At first, Jon and I were determined not to send her back. This has been the second incident at the school and we had lost a lot of faith.  We wanted to scream out how upset we were. We faced a huge challenge. There are very few options for schools for Livy. She had been attending this same school for four years and we had developed relationships with the teachers and staff.
It was becoming increasingly difficult to give her all that she needed at home. At school she is exposed to so many different things: therapy, adaptive equipment, technology and very importantly, her peers. With the help of the attorney, we have worked out a plan to return her to school. She was given a one-on-one assistant and there were changes made in the classroom setting. A safety evaluation was completed and training was done. What happened to Livy that day was completely inexcusable and it was the same as walking away from a baby on a table. You just don't do it. Period.
I will be attending school with her for the time being. Being there allows me to observe and give direction when needed. The teacher has been very attentive and is addressing my concerns. I know how much they missed Livy as well. She appeared to be happy back at school but she was tiring easily. Last week was a long one for us. We have a long way to go still. I am still not sure how I will feel about actually leaving her there again. Time and faith...that is my only guess.
Thanks for taking the time to catch up on us! And for those of you who do not know, our family will be presenting at this year's Family Cafe Conference in Orlando on June 15th. We are really looking forward to it.
http://familycafe.net/
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