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Livy's Hope Blog

Welcome to the Livy's Hope Blog!
Jonathan Scheinman

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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Allison Scheinman

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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Allison Scheinman

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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Allison Scheinman

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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Allison Scheinman

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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our journey of hope.

 

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