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Livy's Hope Blog

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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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Recent Comments
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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Team Livy

Team Livy

Tomorrow Livy starts another round of intensive therapy. For all of those out there rooting today for their favorite football teams, we'd love for you to join Team Livy too!

The last intensive session was incredibly difficult for her and we are crossing our fingers tight that this session will be different. We have completely weaned her off another seizure medication since then so we can only hope she is stronger and more alert then before.

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Recent Comments
Guest — Heidi Fletcher
Livy, we are all cheering for you! You are so very strong in body and spirit and I pray that you breeze through this therapy witho... Read More
Sunday, 30 September 2012 14:57
Guest — Rebecca Catalanello
Go, Livy, go!
Sunday, 30 September 2012 14:57
Guest — Jann Gullick
Go Livy! You can do it!
Sunday, 30 September 2012 15:02
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My Olympic Dream

The Olympics, for many athletes, begins with a dream, a hope or a vision of greatness. Some start participating in a sport at a very early age more for recreation and to have fun with friends. Most try a variety of sports over time, some going on to play in high school and college. The majority of kids stop after that time. However, there are those special, gifted athletes that know from the minute he or she steps foot on a court or grips the uneven bars or wades into a pool that an unbreakable bond has been created. It is a bond and a love that is steadfast and guides them in their lives to follow their dreams.

Along the way, there are many sacrifices. The life of an aspiring Olympian is unlike the life of a typical child. Practice occurs year round perhaps three to four times a week or more with competitions also thrown into the mix. Priorities are rearranged and daily schedules predetermined according to the blow of a whistle or a coach’s insistence on getting there on time. Parents’ lives are one car ride after another to and from the practice facility. But on competition day, there is nothing like being a proud parent.

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Recent Comments
Guest — Aunt Cindy and Jim
Go for the gold, Livy!
Wednesday, 01 August 2012 11:12
Guest — Tasvira Patel
Livy, I watch your training sessions at Lampert's therapy clinic every week and you are an amazing inspiration to us all! Keep up... Read More
Wednesday, 01 August 2012 22:44
Guest — Gary Parrish
I'm so proud of you, Livy! What a blessing you are to me and countless others. Sending you all my love and support, sweetheart! G... Read More
Wednesday, 01 August 2012 22:48
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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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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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Recent Comments
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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Live Well, Laugh Often, Love Much

As 2012 begins, I reflect over 2011 only to find that I am not living the life I want to live and am not the person I want to be. I am sure I am not alone in this assessment. Therefore, in 2012, I plan to live well, laugh often and love much. This is not so much a New Year’s resolution, but a pact with myself. It is a conscious lifestyle change that will take work but will lead to peace, happiness and closer relationships.

Instead of giving something up this year, I want to add value to my life and others’ lives. Making a difference in the lives of family, friends and even complete strangers seems like a life worth living. Living Well is not just about traveling, eating at the best restaurants or having a lot of fun. In my opinion, the people who are most remembered are those who help others or change lives through their generosity and selfless natures. And yet, so many of us pass up the opportunity to do so. I want to wake up each day and be excited about life. Most people work in a job or live a life that doesn’t appear to serve any real purpose which leads to a lack of creativity and a lust for a better future. We torture ourselves into believing if I only had more or if I only had the perfect job, life would be so much better. Well, life is what you make of it. The way I see it and to take a quote from the movie Shawshank Redemption, “It comes down to a simple choice, get busy living, or get busy dying”. Hope and choice are two underlying themes from this movie and both are controlled by each and every one of us. They are intertwined. We all have the choice to bring hope into our lives and to spread that hope to others. We have been given the gift of choice; each day is what we make of it. Each day should be lived as if it was our last.

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Never Quit

I am often reminded of what my high school soccer coach said to me during a preseason game over twenty years ago. We were playing a team from a nearby town that happened to have one of the best offensive players in the state. Lucky me, I got to cover him on defense. Midway through the second half I was clearly tiring. My coach noticed this and yelled to me, “Jon Scheinman, you are one of the guys who are never coming out!” The implicit meaning of his exclamation was that I needed to be ready to play the whole game, to come prepared both mentally and physically and to always give everything I had on the field.

It is often said that we are a sum total of all our experiences throughout our lives. But over the course of time, there are those gems that are forever fused with the fabric of our identities. For me, this is one of those statements.

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Guest — brian morrissey
We had great coaches in soccer and life. I heard them yelling at me every time I am on a run....they are still chasing me down map... Read More
Tuesday, 22 November 2011 10:19
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Partner For Life

It is said that the relationship between a husband and wife transforms after having kids. The focus changes from each other to the little ones pining for attention. Romantic evenings are replaced with sleepless nights. Last minute get-a-ways turn into months of planning for a Disney vacation. A peaceful movie together turns into play, pause, play, pause as we attempt to get some semblance of privacy. By no means am I saying these things are bad. They are just different. I would never give up the family I have today. They are my world.

To some extent, I was prepared for this type of transformation. Obviously, Livy has brought an entirely new perspective into the equation. That I was not prepared for. But as most things in life that are unexpected, one learns to adapt. In our case, we attempt to view the situation in a positive fashion by sharing our experiences with others in order to bring light to a side of life often kept in the dark. There are many clichés to describe our situation, making lemonade out of lemons, what doesn’t kill you makes you stronger, you must have been chosen for it because you would be able to handle it and the list goes on.

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Recent Comments
Guest — Diane
Happy Anniversary to a most wonderful couple! Lots of love, Diane
Tuesday, 13 September 2011 22:03
Guest — Keely McFarlane
A journey such as this has ended many relationships. It is work to keep a "normal" marriage functioning much less one that has str... Read More
Wednesday, 14 September 2011 08:17
Guest — Cindy Karwowski
Your message of love is so beautiful! Happy Anniversary! Love, Aunt Cindy and Jim
Wednesday, 14 September 2011 10:30
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Livy's Intensive Therapy - August 2nd




Livy has started her second week of intensive therapy. She did show signs of fatigue over the weekend but was up and ready to go Monday morning.

The first thing the therapist does each morning is put on heat packs and then stretches and massages her. What a great way to start the day! Then they move onto weight work on the table. The therapist has been alternating her arms and legs each day. The next step is putting on the Therasuit. One of our goals for Livy is to gain strength and control in her quadraceps so that she can learn to bear weight through her legs. One way they are working on this is by standing her with one leg immobilized to try to get her to initiate pushing through the other leg. One of the videos to the left demonstrates this idea. It is a challenge for her to tell her brain to tell her leg what to do. Cerebral Palsy, one of Livy's other diagnoses, inhibits her brain from communicating with other parts of her body. That is why we are trying to "train" her brain into learning how to create these pathways.

Livy also does sit-ups and back extenstions, both which she does very well. Her core is quite strong but her length is what makes everything so challenging. These exercises will help her reach one of her goals which is to roll herself over from side to side. She still is not able to reposition herself while sleeping so Jon and I get up almost nightly to turn her and make her more comfortable. It would be a great improvement if she could learn to move herself. She basically can roll to her right side but cannot roll to the left. A lot of it has to do with the loss of muscle function/control on her right side due to her hemispherectomy. We are hoping that with repetitive movements, she can learn how to roll in both directions.

Each day we know she is gaining strength. She continues to smile through nearly all the exercises even though they are exhausting. Jon and I can't say enough about how important the intensive therapy sessions are for her. 
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