Livy's Hope Blog

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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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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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Guest — Gary Parrish
Congratulations, Hailey, for your nomination! I just voted for you! I'm so glad Livy is back home! I hope you can get her meds pro... Read More
Friday, 09 November 2012 23:09
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We Move Together

Allison and I took our wedding vows 14 years ago today. For years, we did what happily married, childless couples do. We spent time with friends, went to dinner and to shows, moved from place to place and generally mapped out what the rest of our lives would look like. When the girls were born and we realized that Livy had another plan for us, we were left meandering into uncharted territory. Quite often under these circumstances, couples stand at a crossroad; do they continue on together or go their separate ways. The harsh reality is that a very high percentage of marriages crumble under the weight of such a life changing event.

The book Somewhere in Heaven tells the amazing story of Christopher and Dana Reeve. Christopher Reeve passed away on October 10, 2004 and his wife Dana passed away only 17 months later on March 6, 2006. Many people remember Chris Reeve as Superman from the big screen. However, not enough people know the story of the super person he was and the lives he affected after his horse riding accident on May 25, 1995 that left him paralyzed from the neck down. Perhaps overshadowed in the media by all that Chris did was his relationship with Dana. She was his rock and his hero. She was always there to raise his spirits, to encourage him and to help him believe that he had a purpose. They inspired each other and the world by the hurdles they overcame, the lives they changed and the committed marriage they shared.

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Recent Comments
Guest — David George
Happy Anniversary to you both! Your story is inspirational. I stand in awe of your positive spirit. Thank you for sharing your ... Read More
Thursday, 13 September 2012 13:56
Guest — Debbie Hadlock
Happy Anniversary to you both! You are a positive example to all marrried couples that those vows are not to be taken lightly. I... Read More
Thursday, 13 September 2012 15:37
Guest — Sue ullivan
Happy 14th Anniversary Jon and Allison!
Thursday, 13 September 2012 17:26
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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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Recent Comments
Guest — Gary Parrish
Awesome! Beautiful! What a wonderful family! Gary Parrish
Wednesday, 05 September 2012 12:29
Guest — Deborah Telles-Palladino
What a wonderful giving thing to do! You never cease to amaze me! Deborah
Thursday, 06 September 2012 03:33
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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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Recent Comments
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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Recent Comments
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.

Recent Comments
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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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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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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Recent Comments
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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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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What If...

As a parent of a disabled child, I constantly find myself asking “What If”. What if we had two healthy twins that could play and talk together? What if we didn’t have to live by the clock to administer medications? What if we could celebrate a holiday and not have to worry about seizures or ending up in the hospital? What if Olivia was able to tell us how she feels and where it hurts? What if I could wake up one day and Olivia could look into my eyes and say, “Daddy, I love you.”

What if. Those two little words that will forever keep me wondering. Every day is a struggle to let go of the dreams we had that will never quite turn out the way we thought they would. Most parents envision their kids going to school, then to college, then getting married, then grandchildren and a host of other things in between. I have now replaced those thoughts with hope. Hope that Olivia will be able to sit up by herself and watch her sister showing her a new Barbie. Hope that Olivia will one day be able to conjure up enough strength to take that first step by herself even if she is wearing leg and arm braces. Hope that one day Olivia will be able to raise her head and simply say hi. And hope that if nothing else, I can tickle her and she will know for an instant what it feels like to laugh.

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Siblings Of Kids With Special Needs

Siblings of children with disabilities are very special individuals. They are exposed to a life that the majority of kids will never know. They see their parents go through physical and emotional distress dealing with incredibly difficult situations and decisions. These kids are often shuffled off in tow to doctors and physical therapy appointments, hospital visits and equipment fittings. In the same trip, they may also have a play date and birthday party to attend. Holidays are typically celebrated at home or very near by while friends are flying or traveling long distances to celebrate with relatives. Vacations as a family can often last for only a long weekend since leaving the security and comfort of home can test the patience of even the most seasoned parents.

These children tend to think of the abnormal as normal. They are remarkable and develop an understanding for a part of life that is seldom in the public spotlight. At times, some rebel because the desire for a conventional life is so great. Often their characters glow with empathy and acceptance that is nearly impossible to teach unless lived first hand. They tend to spend an abundance of time with grandparents and other relatives, learn the importance of family support at a very early age and are able to make a positive impact on other kids and adults by sharing their experiences.

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Recent Comments
Guest — Kelli McIntosh
Thank you for this post; so well written and exactly the thoughts I think about my own situation. My son is 7 and has special nee... Read More
Friday, 03 May 2013 19:55
Guest — Alana Terry
Yes, I love the idea of siblings being unsung heroes. My oldest son is an amazing, compassionate 7 year old and went through so mu... Read More
Friday, 03 May 2013 22:27
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