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Livy's Hope Blog

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Allison Scheinman

Pedis, Hips and CBD

Pedis, Hips and CBD

A long overdue update on our little sweetheart.

The past few months have been pretty stable for Livy. She continues to have some rough patches but they are short lived and manageable. We can't believe the girls turned nine in December. And with each year comes new challenges. As Livy grows, it becomes more difficult for her to keep up with the weight of her body. This makes the task of trying to sit up a big feat. We continue to encourage her to use her arms to hold her up but she resists using her left arm and hand. To this day, the only thing she will hold onto in that left hand is another hand or finger. Maybe just the human touch is all she prefers (or all that she can tolerate).

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Allison Scheinman

Holding Back On Big Expectations

Holding Back On Big Expectations

Change can be a really good thing but it can be difficult too. This time of year brings on a change in all of our lives. So much excitement and build up for the first day of school. The night before, outfits are put out, backpacks are ready to go, lunch is made and we all imagine how the next day will play out. Hailey was bundled with excitement especially having learned she is in the same class as her best friend for the fourth year in a row. She had missed school a lot and was eager to get settled back in. I think the night before the first day of school is like Christmas Eve to her. This makes me so happy, I love that she loves school. Jon and I don't remember having been that eager!

As parents, we always wish for a great start to the new year. After we drop our kids off, we pray the day goes smoothly. We hope our kids like their new teacher, that the kids are nice, and that something fun and memorable happens that day. We will badger our kids with questions when they come home, trying to recreate their day in our minds.

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Allison Scheinman

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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Allison Scheinman

My Least Favorite Three Digits

My Least Favorite Three Digits

Today started out a little rough. Livy has been having some breakthrough seizures coming out of sleep in the early mornings. No rhyme or reason...they are just showing their ugly faces again. We can usually tell what type of day she is going to have based on the amount and size of her smiles :) This morning, not so many and not so big.

The rain was coming down pretty hard and I debated about taking her to school. She was now awake and alert and I took the chance and took her in. Dropping her off, I said to her, "Now you behave sweetie...mommy doesn't want any phone calls today." Let's just say, she had other plans.

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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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Jonathan Scheinman

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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Allison Scheinman

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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Allison Scheinman

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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Allison Scheinman

Gearing Up

Gearing Up

It's that time again, time to gear up for intensive therapy! For those of you that read about Livy's last intensive session, you know it wasn't a hit. For some reason, the physical exhaustion took over and Livy just couldn't get through the first two hours of each day, never mind the whole three weeks. She would fall asleep and then startle with a seizure each day. After a week and a half of really trying, we decided to put it on hold.

Her next session is scheduled for the first week of October. We are going to attempt a one week session to see how she tolerates it. She seems stronger and more stable so we are hopeful. But Livy calls the shots.

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Allison Scheinman

An Angry Letter

Dear Epilepsy,

I have been wanting to write to you for some time now. It's only just recently that I was reminded again how you can sneak up on a person without warning. You have been a part of our lives for almost eight years now but you still seem a stranger to us. Just when we think we know you and feel like we can control you, you come back showing your ugly face.

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Recent Comments
Allison Scheinman
Gary, I didn't mean to cause alarm. When I stated that the seizure "took Livy from us briefly" I was referring to how she becomes ... Read More
Wednesday, 22 August 2012 15:27
Allison Scheinman

Enjoying The Ride

Enjoying The Ride

What a great summer it has been! We are still coming down from the great high of the newspaper article. Rebecca Catalanello and Melissa Lyttle captured the story of the girls so well. We spent quite a bit of time with them and shared more about our lives than they probably could handle :)

It was an interesting experience recalling all the memories Jon and I have created together starting from the day we met so many years ago in the club in Providence. We dug deep to remember the times we've tried to forget, all those difficult times we had with Livy. Jon found the tapes of video we took early on of the girls and re-living those memories was both amazing and heart breaking. Hailey was able to see the ups and downs of this journey and in some small way understand what we have experienced. We thought of times we held each other and cried at Livy's bedside in the hospital and of the time we celebrated her homecoming. All of this has somehow helped me to truly appreciate where we are now and how amazing our life has been.

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Allison Scheinman

Talk of Summertime

Talk of Summertime

Summer is in full swing and we are all keeping very busy. Livy has been attending the ESY (extended school year) program at her school. It is a shortened day and only four days a week but it allows her to keep working on her skills so they are not lost over the summer break.

We had a wonderful presentation at the Family Cafe in Orlando! We were a bit worried about Livy because the day before she woke with a long seizure and slept most the afternoon. But it all went off without a hitch and she did beautifully. Jon is working on the video and hopes to have it up soon. It was a very positive experience for all of us and we met some wonderful people. Hailey had a blast the entire weekend. We hope to do this again next year.

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Jonathan Scheinman

A Yin and Yang Week

Livy Rolling

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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Allison Scheinman

One of Those Days

Today was going to be a better day. Hailey and I are both feeling better now finally getting over a stomach bug. I was rushing around trying to get myself and the girls ready to go. Hailey was staying home from school one more day and I was going to drop her off with my parents.

We found out that Livy was getting the Student of the Month award today at the school assembly! I was excited about bringing her in and watching her go up to get it. Just as we were about to leave, I noticed Livy was starting a seizure. No, not now Liv. I waited to see if it would stop and tried calming her down and maybe get her to fall asleep. Sometimes that helps to stop the cycle. But, no luck. I had to give her some medication to stop it and she finally fell asleep.
I felt so sad, so disappointed, so angry. Most days when she is having a seizure I can accept it and move on. Some days are different though. I just wanted today to be a special one. Why couldn't it just be normal? I was a mom just looking forward to a special day for my daughter.
Our family has learned to be very flexible. Each day is a mystery around here. We never know what to expect. Jon told me that our life isn't just the norm - one that goes on at a normal, not so thrilling pace - but one with great highs and lows. I asked Hailey if it ever bothers her, the way our life is different. "It's not different to me", she says. She put her little arm around me and said, "Isn't it cute how Livy is snoring right now?". I just smiled.
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Allison Scheinman

Long Time No Blog

I am just realizing how long it has been since I have updated this blog! I tend to use Livy's CarePages and Facebook for updating and was having trouble posting blogs using my other computer. Now I intend on keeping this blog more up to date.

We have come a long way since Livy's fall at school. It was a difficult time for all of us. I kept Livy home with me for just about four months. Our first priority was getting her better. She needed time to heal and had a very difficult time with sleeping. She had some regression physically and is just now about back to where she used to be.
Jon and I consulted with a special needs attorney and advocate regarding her return to school. At first, Jon and I were determined not to send her back. This has been the second incident at the school and we had lost a lot of faith.  We wanted to scream out how upset we were. We faced a huge challenge. There are very few options for schools for Livy. She had been attending this same school for four years and we had developed relationships with the teachers and staff.
It was becoming increasingly difficult to give her all that she needed at home. At school she is exposed to so many different things: therapy, adaptive equipment, technology and very importantly, her peers. With the help of the attorney, we have worked out a plan to return her to school. She was given a one-on-one assistant and there were changes made in the classroom setting. A safety evaluation was completed and training was done. What happened to Livy that day was completely inexcusable and it was the same as walking away from a baby on a table. You just don't do it. Period.
I will be attending school with her for the time being. Being there allows me to observe and give direction when needed. The teacher has been very attentive and is addressing my concerns. I know how much they missed Livy as well. She appeared to be happy back at school but she was tiring easily. Last week was a long one for us. We have a long way to go still. I am still not sure how I will feel about actually leaving her there again. Time and faith...that is my only guess.
Thanks for taking the time to catch up on us! And for those of you who do not know, our family will be presenting at this year's Family Cafe Conference in Orlando on June 15th. We are really looking forward to it.
http://familycafe.net/
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Allison Scheinman

An Unfortunate Report

We have some unfortunate news to share. There was another incident at Livy's school a little over a week ago. For those of you that have been following Livy's progress for some time, you know that her left femur was broken at her school in February last year. After a lengthy investigation, there was no fault found. Jon and I had lost our faith in her school for a period of time. It was very difficult making the decision to send her back. After a promise of increased safety measures, new staff and a lot of time, we did send her back.

All had been going so well. We were so happy with her new classroom. Her teacher was sending us glowing reports of how happy she was in school. Her therapists shared with us how much progress she was making. We were so happy for her and were feeling really good and safe once again.

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Allison Scheinman

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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