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"Livy's Hope Cupcake" at The Cake Bar

"Livy's Hope Cupcake" at The Cake Bar

We are so excited to tell you about an amazing event that will be taking place next week. We were approached by a very dear friend, Tracie Turinese, owner of The Cake Bar in Franklin, MA about doing an event to raise money for Livy's Hope! She asked if Hailey would design a cupcake in honor of Olivia. As you can imagine, Hailey was thrilled and got right to work coming up with an idea. The "Livy's Hope Cupcake" will be offered next weekend January 18, 19 and 20 at the bakery and all proceeds will be donated to Livy's Hope. Needless to say, our family is so thankful and excited for this beautiful act of kindness. We have all tasted the amazing cupcakes from this bakery in our hometown. Tracie is a gold medal winner of the Food Network Challenge!

The "Livy's Hope Cupcake" is a moist chocolate cake stuffed with rich chocolate ganache, smothered in strawberry buttercream, and garnished with a very special butterfly. Hailey felt it was very important that the colors matched the "Livy's Hope" logo and that the very important butterfly, resembling hope, be on each cupcake.

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Recent Comments
Guest — Sara Madden
Hello, My name is Sara and I am the VP of the Franklin, MA SEPAC Special Education Parent Advisory Council. I just heard about yo... Read More
Wednesday, 09 January 2013 17:24
Guest — Carol Lee
Nice!
Thursday, 10 January 2013 18:54
Guest — Lisa B.
Although we were out of town for this event, we heard that it was a huge success! Friends helping friends and a community showing... Read More
Monday, 21 January 2013 20:09
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What Is Your Message?

Happy New Year!!

2012 is now in the past. Looking back over the year, can you say that you were truly the person you wanted to be? Instead of making resolutions each year to stop doing something, I now make goals so I am motivated to achieve more. I have goals for various parts of my life including family, career, recreation and personal growth. Livy’s Hope is a big portion of personal growth.

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Recent Comments
Guest — Kim Hill
Love this poem! What an inspiration!! I plan to print it and keep it visible to remind myself to keep focused on my vision!!... Read More
Tuesday, 01 January 2013 17:17
Guest — Gary Parrish
What an amazing family! Very beautiful and thought-provoking poem, Jon! Hailey, you are such a treasure! What a gift you are to th... Read More
Tuesday, 01 January 2013 18:10
Guest — Karen Jacobs
Beautiful poem Jon, and again I second what Gary says. I don't believe I have an original thought in my head. Guess it comes wit... Read More
Tuesday, 01 January 2013 19:40
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A Fun Christmas Eve Giveaway

Happy Christmas Eve Everyone!

We thought it would be fun to have a little holiday giveaway and give you a little challenge while we all wait for Santa to arrive.

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Guest — Katie eaker
Molift
Monday, 24 December 2012 10:38
Guest — Allison
Hi Katie! To complete your entry, please enter the Rafflecopter Giveaway and click that you have posted a comment. Thanks for pla... Read More
Monday, 24 December 2012 10:44
Guest — Amanda St. Dennis
Molift. I have also filled out the Rafflecopter and Merry Christmas.
Monday, 24 December 2012 11:39
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A Little Holiday Poem

A Little Holiday Poem

'Twas the week before Christmas and all through our place

There are streamers and balloons and signs of outer space.

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Guest — Carol
Cool poem! hugs, l
Monday, 17 December 2012 21:32
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Giving Back

When creating Livy’s Hope a few years ago, our focus was on detailing Livy and our family’s journey through the ups and downs that have accompanied Livy’s medical condition. We have learned so much about ourselves and our views on life. From Hailey’s perspective, this is the way it is supposed to be. She doesn’t know any different. We don’t take long vacations and certainly don’t travel far from home as a family. Our home is our fortress where we find comfort and security in what we know best. When we ask Hailey if she is unhappy that we haven’t done many things families usually do, she answers with a confident, “It doesn’t bother me at all. I love my family the way it is.” She is a remarkable 8 year old. I hope she continues to feel that way as she gets older.

Allison and I often discuss our inability to travel and do certain things as a family. One Saturday morning, not long ago, we were sitting in our kitchen after just having heard an advertisement for Christmas Town at Busch Gardens. Allison got really sad because it sounded like so much fun. But we know for us, it would be too difficult. The last time we took Livy to Disney, she had seizures from the afternoon through the evening. There was far too much stimulation. So I told Allison that it’s true, we can’t do many of the things other families can do. But then I added that we have the opportunity to do something extraordinary. By sharing our story on Livy’s Hope and helping others, we have the chance to change lives and to make a real difference. Spreading hope to a single individual can influence hundreds if not thousands more. It only takes one person to start something great. At that moment, I saw the light shine in her eyes like I haven’t in a long time.

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Recent Comments
Guest — Gary Parrish
Wow! Hailey, your new bracelets are so beautiful! That is a very, very kind thing you are doing to help bring joy to others. I'm s... Read More
Thursday, 13 December 2012 09:04
Guest — Karen Jacobs
Seeing as Gary Parrish is as gifted with words and writing as are you both, I will just second EVERYTHING he has said so beautiful... Read More
Thursday, 13 December 2012 12:43
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Holiday Hope

Holiday Hope

It is always amazing how quickly the holidays creep up on us. We have been very busy getting ready not only for Christmas but for the girls' eight birthday on Saturday! It's unbelievable that at this time eight years ago, Jon and I were eagerly awaiting the arrival of our twin girls. It was a time of excitement and nerves. Life took an interesting turn that year and we were given two amazing gifts. Each year we are reminded how lucky we are and how far we have all come as a family.

Livy's Hope is very special to us and we believe in all that it stands for. We love sharing our story including all the ups and downs. It is a part of our lives that keeps us inspired and motivated to stay positive. Thank you all for being here with us for the ride.

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Recent Comments
Guest — Laurie
Got mine today - it is beautiful! - Thanks
Monday, 10 December 2012 21:44
Guest — Allison
Yea! So happy you like it! We really love the butterfly shape.
Tuesday, 11 December 2012 20:53
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Turning On A Dime

Turning On A Dime

We have been talking a lot about dimes at our house over the past few weeks. Hailey is working on a project for her gifted program and her focus is on Franklin Delano Roosevelt. Last week, for some reason, she asked me which president was on the dime. I should have known this one but my memory escaped me so I Googled it. Low and behold, it is FDR. And after a little more research, I discovered why he is on the dime. Back in 1937 FDR asked people to contribute money to fund research for Polio. The National Foundation for Infantile Paralysis (NFIP) was born. In 1945, as a result of an extremely popular marketing campaign asking Americans to send dimes to the White House to fund the NFIP, the organization was renamed the March of Dimes. The March of Dimes is now focused on preventing birth defects and infant mortality. The dime was chosen to honor FDR partly for this reason. Amazing how the smallest coin in the US played such a tremendous role.

Lately, life has been turning on a dime. Our world revolves around Livy and her medical needs. Over the last six weeks, she has had a broken heel and a cast, spent a week in the hospital and has had the flu. This coming Monday, after all the events of the past few months, she is scheduled to return to school. Before she broke her heel, she was doing the best she has ever done. One minute she is doing great, the next, we are in intensive care not knowing if we are going to be able to stop her seizures. The medications we were throwing at her were a dime a dozen. Watching her reminded me of the movie Forest Gump when Lieutenant Dan secured himself to the top of the shrimp boat mast screaming at God, "Is that all you got?" Livy's brain was saying the same thing to the doctors and the seizure meds. Her brain is a powerful enigma we truly do not understand. The odd thing is, when we finally found the correct combination, Livy's seizures stopped on a dime. They settled down as quickly as they appeared.

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Recent Comments
Guest — Diane
Words of wisdom for sure. We all need to take the tally every day and give thanks for all the positives in our lives. Lots of lov... Read More
Friday, 07 December 2012 14:33
Guest — Cindy L.
Well Said!!!
Friday, 07 December 2012 14:34
Guest — Karen Jacobs
I truly wish I could write as wonderful as you and your wife. You say 'thanks for reading', I say ' thanks for writing' - you bot... Read More
Friday, 07 December 2012 19:26
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Happy December!

Happy December!

Today is such a happy day at our house. It is the first day of December and Hailey has been eagerly awaiting to put up the Christmas tree. We have dug all the bins out of the garage and the holiday season has begun! I remember as a little girl how much I anticipated the holiday decorating. I couldn't wait for my dad to drag the boxes out of the attic and start stringing cranberries and popcorn for garland. The music was up loud and my spirits were high. Such amazing memories.

I am so happy to say that the spirit is alive in our house and we have so much to be thankful for. Livy has turned a corner and is doing great. The cast came off this past Thursday and she is healing well. Her hormone re-implant surgery went without a hitch on Tuesday too! We were in and out in no time at all. On the way out of the surgery center we met a wonderful family from Crystal River that recognized Livy from the newspaper article. It is always so funny to hear "Is this the Livy from the paper?". Our little super star. The family was originally from Clearwater and their daughter has a lot of similarities to Livy. I am looking forward to getting to know them, they seem like a very cool family.

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Recent Comments
Guest — Gary Parrish
I'm so happy to hear that Livy is doing well! Keeping my fingers crossed that she has an incident-free Christmas this year, and yo... Read More
Saturday, 01 December 2012 20:43
Guest — Allison
Happy Holidays to you Gary from all of us!
Tuesday, 04 December 2012 10:57
Guest — Laura Smith
So glad to hear things are going well at your house! It has been a while since your last blog and I was worried. This time of year... Read More
Sunday, 02 December 2012 04:40
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Opening of New Livy's Hope Shop

Opening of New Livy's Hope Shop

We are excited to announce the opening of the new Livy's Hope Shop! 

One of the many lessons we have learned while caring for Livy is the importance of giving back. We have met numerous wonderful people along our journey and have been helped by so many. 

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Guest — Carol Lee
Hi, Hailey and Company! I owe you some money. My granddaughter called to tell me she had received the 'lost' bracelet last week! ... Read More
Tuesday, 20 November 2012 11:09
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You Have No Idea...How Much It Means

You Have No Idea...How Much It Means

"You have no idea".

I have been saying that a lot the past few days. We just cleaned our carpets and I said to my mom and dad, "You have no idea how bad they were...and how much better they look and how happy it makes me."

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Guest — Andrea
Isn't it amazing how children can show so much compassion and have the abilities to think beyond themselves. I am also continually... Read More
Friday, 16 November 2012 15:11
Guest — Gary Parrish
Allison, YOU have no idea (Or maybe you do...?) Just how much Livy and the rest of your amazing family is loved and cared for by m... Read More
Friday, 16 November 2012 15:20
Guest — Travelswithtessie-toodles.blogspot.com
Hi Allison, I found your blog via a comment you left on one of my blog posts. You had mentioned that our girls had much in common... Read More
Saturday, 24 November 2012 08:26
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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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No Tricks All Treats

No Tricks All Treats

We have been able to stabilize Livy for the most part with a maintenance dose of Dilantin. She appears to be a little more like herself from time to time. Stretching, rubbing her nose, yawning and yes, we are seeing the tiniest of smiles :) She is also exhausted and can barely keep her eyes open. Rest. Rest. Rest.

Jon and I switched roles last night and I was able to get some much needed Hailey time. The time with her flies by so quickly and I try not to get too emotional when I am at home but everything seems so empty when Jon and Livy aren't there. I just try to imagine us all together again.

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Recent Comments
Guest — Vera
What a bunch of conflicting emotions for you today. At least it ended with a smile as you could "join" the gang trick-or-treating.... Read More
Wednesday, 31 October 2012 21:19
Guest — Gary Parrish
Looking forward to the day when the 4 of you will never have to be apart again... Love, light and prayers to each of you. Gary Pa... Read More
Wednesday, 31 October 2012 21:23
Guest — Stavria
Im glad Livy had a better day. How brilliant to Skype while trick or treating!
Wednesday, 31 October 2012 21:41
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Hanging In There

Livy's seizures increased dramatically Friday evening and she was taken to intensive care. She had been given Ativan multiple times and also a dose of Diastat. After no success, the doctors gave her a loading dose of Dilantin and Depakote. She finally settled down around 5am on Saturday. The rest of the weekend she was pretty quiet. With the addition of all of these new medications she tends to be very lethargic and not at all herself.

She had a flurry of seizures around 9:00 last night. Another dose of Ativan put her to sleep and she slept, as far as I could tell, all night long. She woke this morning with another shorter and milder flare up and she did not require another dose.

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Recent Comments
Guest — Kathie
Praying for this precious little girl that her little body can fight off these horrible seizures. Also praying for strength for he... Read More
Monday, 29 October 2012 14:25
Guest — Paige and Ivan
Keeping Livy in our prayers!
Monday, 29 October 2012 18:51
Guest — Ms. Tracy
Livy I mis you sweetie. You and family are in my prayers. Get well, Im having livy withdraws.
Tuesday, 30 October 2012 10:22
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PICU vs. Party

PICU vs. Party

Yesterday morning it was becoming pretty apparent that Livy was only getting worse. We have a certain amount of "emergency" medications for seizures we can give her at home before respiratory issues can arise. I had maxed out everything and she only continued to seize. Jon came home from work and we weighed out everything. Hospital stays for Livy are never short when it comes to seizures. I am not talking days but weeks and sometimes months long. We always do whatever we can to put off going as long as possible. We looked at each other and both knew it was inevitable.

The ER stay lasted from just before lunch until after 8pm last night. It had been over two years since we had been there for seizures. All those precious months of control. They did lab test, a shunt series, x-rays and an MRI. The only thing they found was that her sodium was running a little low (128). She tends to run in the low 130s but the dip below could be cause for increased seizures. After consulting with Livy's neuro up at Shands, they decided to start her back up on the seizure med we just finished weaning last month. She was admitted just after 8:00pm.

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Recent Comments
Guest — Gary Parrish
I so appreciate your updates. Although we've never actually met, I care for you all very much - especially Livy. I have been think... Read More
Saturday, 27 October 2012 23:28
Guest — The Cortes Family
We know God is shining on Livy, maybe even more during these difficult times. We will pray for a short hospital stay for all of y... Read More
Sunday, 28 October 2012 00:20
Guest — Amanda
although we have never met I am new to the blog. I am praying for all of you during this difficult time. all the way from canada... Read More
Sunday, 28 October 2012 08:02
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Perfect Storm

Monster Storm Has Meteorologists Spooked. This is one of the top stories today on Yahoo. There is a potential collision of a hurricane and arctic blast over the East coast that could be worse than the 1991 "Perfect Storm". After reading the title, that is just how I felt about life in our family right now, our own perfect storm.

Last Tuesday night Livy had a flurry of seizures in her sleep. We weren't quite sure what to make of it but it made for one rough night. There is nothing like being woken from a dead sleep to the sound of your child seizing. I have friends who know exactly what this is like and they would agree. She appeared to be OK during the daytime for the next few days but the nights were terrible. Nocturnal seizures are not usual for her and we knew something was brewing. Jon and I started brainstorming. The barometric pressure dropped dramatically last Tuesday. Ahh, that must be it! Or maybe it is because Livy is due to have her hormonal implant changed out and the medication must be not as effective. That must be it! Or is this just Livy in her ever changing seizure cycle?

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Recent Comments
Guest — Margie
Poor baby. She is so blessed to have you both - hopefully the healing will be swift.
Thursday, 25 October 2012 11:34
Guest — Karen W. - Massachusetts
I am amazed at your strength and love. You are amazing parents. I hope Livy improves quickly.
Thursday, 25 October 2012 12:02
Guest — Amy (Bertone) Lane
You and Jon are THE BEST parents any child could ever hope to have. So much love. Sending healing thoughts your way.
Thursday, 25 October 2012 12:30
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A Sister's True Talent

I often wonder what Hailey would have been like had Livy not been born with disabilities. Would she be as considerate, empathetic and loving as she is today? Would she be as compassionate, tolerant, and mature when interacting with people? I really don't know the answer. The fact is, Allison and I would still have raised her with the same values...love your family, be polite, kind and respectful and value life for all that it is. But Livy has taught her lessons about life that we never could have.

To see Hailey wander into Livy's room to say good morning is a beautiful sight. She climbs into Livy's bed, cuddles right up next to her and puts Livy's arms around her. Then they smile together and Hailey laughs as Livy unknowingly tickles her. When Livy is on her mat on the floor, Hailey gets down right next to her and rolls around with her. She is constantly encouraging Livy to do her best.

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Recent Comments
Guest — Poppi
What a wonderful testimony to nurturing of children no matter what, and what wonderful parents for providing the inspiration. Love... Read More
Friday, 19 October 2012 15:58
Guest — Aunt Cindy and Jim
"HOW PRECIOUS"...just begins to describe the stars in the video!
Friday, 19 October 2012 20:27
Guest — Bron
How very beautiful. My daughter also shares those qualities that i am sure come from having a sibling with cp and how we parent as... Read More
Sunday, 21 October 2012 04:34
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Grandpa's Wish

My mom and dad took me out to lunch today for my birthday to my favorite restaurant. It was such a treat and I loved spending the time alone with them. We are usually surrounded by my girls or my sister's son so this was quality adult time. We got to talking about a wish my dad has always wanted, to spend a vacation with all of his kids and grandkids. Sounds like a perfectly reasonable and typical request from a grandparent. Growing up I spent many vacations on the road with my family traveling to Chicago, Nashville and the Smokey Mountains. We were even able to go to Europe as a family (my mom wouldn't go without us kids). I have so many wonderful memories of a childhood filled with lake swimming, water skiing, hiking, alpine sliding, and so many other great adventures. We were lucky.

Jon and I know how important it is to give our family adventures as well. But reality is, we aren't living in the same reality. As parents of a child with special needs, we know too well the difficulties that come with traveling away from home. We have tried as a family days at Disney, hotel sleepovers, trips in the car. They all came with hardships that took the fun out of the "vacation". 

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Recent Comments
Guest — Carol
This probably isn't even a little bit realistic on my part, but as I read this I was thinking of a fun visit we made to our middle... Read More
Friday, 12 October 2012 18:15
Guest — Susie Rich
Happy Birthday, Alli!! I hope you will never again question the life that you and Jon have made for your wonderful children. So w... Read More
Friday, 12 October 2012 18:57
Guest — Kathy
HAPPY BIRTHDAY ALLI! I remember your family vacations. I loved when you would visit us in NY. You always came with Dunkin Donut... Read More
Friday, 12 October 2012 20:09
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"I Am Hope" - A Gift for Livy

"I Am Hope" - A Gift for Livy

Please take a moment and listen to this song "I Am Hope". It was written and performed by musician Carmen Magro in honor of Olivia. Proceeds from the downloads of the song will be going to Livy's Hope. We are forever grateful for Carmen's gift and are amazed by his generosity.

This is a message from Carmen:

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Guest — Rose Egnacheski
I just listened to I Am Hope and it so amazing!! What a beautiful way to honor Olivia!!! I am very touched by the generosity of Ca... Read More
Thursday, 11 October 2012 07:41
Guest — Rose Egnacheski
One more thing I forgot to mention is that I love the musical butterfly logo!!!! ... Read More
Thursday, 11 October 2012 07:43
Guest — Becky
Beautiful song, this will touch so many people.
Friday, 12 October 2012 12:21
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Finding Hope Around The World

Finding Hope Around The World

Livy's Hope has begun a new initiative: Finding Hope Around The World. The goal of Finding Hope Around The World is to uncover as many stories of hope from as many countries as possible. When we were discussing the concept, we thought it would be a good idea to have a theme song. So we put the word out on facebook to see if anyone had some contacts in the music industry who would be willing to help. A friend from high school responded that she may be able to help. And help she did. She introduced us to Carmen Magro, a musician from Philadelphia who I wrote about in a previous post. Carmen was more than willing to work with us to write and record an amazing song that really gets to the heart of having hope.

The name of the song is I Am Hope. The basis for I Am Hope is derived from a poem I wrote called My Name Is Hope. Since I am more of a poet than a song writer, Carmen used the basic premise of my poem and incorporated it into his song. We couldn't be happier with what he has created. We really feel the power of music when listening to his song. It will be a major part of Finding Hope Around The World and we intend to incorporate I Am Hope into a video in the next couple of months.

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The Love of a Stranger

The Love of a Stranger

On our way to the last day of Livy's intensive therapy session today, I stopped off at a local Einstein Bagel for some coffee. I figured I would quickly wheel Livy in, grab my coffee and go. But, it proved to be a remarkable little journey and a really wonderful moment. 

In line, the woman behind the counter recognized Livy from the Tampa Bay Times newspaper article from a few months back. She asked how the girls were doing and I explained that we were on our way to one of the intensive therapy sessions that so many have helped to support. She proceeded to explain to the others working with her who we were. I was so surprised that she recognized us and really appreciated her warm greeting.

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Recent Comments
Guest — Susan Sullivan
Jon, sometimes in our lives we do run into strangers {as we are strangers to them] and all we have to do is smile and say "hello".... Read More
Friday, 05 October 2012 17:13
Guest — Bron
Lovely to find your blog and thanks for visiting mine. Lovely to hear your story of the kindness and genrosity of strangers xxx yo... Read More
Friday, 05 October 2012 20:34
Guest — Marie MacSwain
What a great picture of Livy. Love her look of enthusiasm. She must have enjoyed being a celebrity. Touching story - people are... Read More
Friday, 05 October 2012 21:00
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