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Livy's Hope Blog

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Because of You

Because of You

We do what we do because of you. We continue to keep going because you told us we can. We get through and find peace in another day because you stand by us. We are who we are because you encourage us.

We knew we couldn't do this alone so we asked others to help, and they have.

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Guest — Debbie Hadlock
What you are doing is awesome!!!! Big hugs to all of you and keep up the good works you do for so many others. What an important... Read More
Friday, 15 February 2013 11:29
Guest — Gary Parrish
Your entire family never ceases to amaze me! Despite everything you have gone through you still have so much love and light to sha... Read More
Friday, 15 February 2013 20:21
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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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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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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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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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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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