Thursday, July 22, 2010

THE LONG ROAD

It's been several months since Emmie started having seizures. She has been on 2 medicatons....Zonisamide & Clonazepam. Emmie started out having 10-15 seizures/day, then she dropped down to 6-7/day. After several adjustments, increasing the dosage & changing the times the meds were administered, we finally hit 0!!!! I think the angels in heaven sang for a few days. :)

After we reached the "sweet spot" (that's what I call it), the neurologist wanted to leave the meds & the dosage right at that point. Emmie's med schedule was as follows:
  • 6:00am...2 wafers Clonazepam..these wafters dissolve in Emmie's mouth
  • 6:30am...1 capsule Zonisamide...the capsule is opened & poured into a juice bottle
  • 9:30am...1/2 Clonazepam wafer
  • 2:00pm...1/2 Clonazepam wafer
  • 5:00pm...2 capsules Zonisamide
Whew! That is 5 times/day!! How do I remember all of that, you might ask? Well, it's become routine & I have a very good memory. Plus, when it comes to my kids, it's hard to forget something so important. The hardest thing is remembering to bring the medication with us when we leave the house. I can't tell you how many times we have been several miles away from the house & I have to turn around & come back to get the meds...frustrating!!

About a week ago, the angels stopped singing. Emmie started having seizures again...4/5 times/day. The dr. said this could happen as the Clonazepam can have a "honeymoon" period. It's different for every child, so it's hard to say how long that period will last or with some children when they hit the "sweet spot", that's all they need. That's the hardest part...not knowing. I want to know how this will all turn out. When will the seizures stop? Will Emmie need meds forever? Will she outgrow the seizures? Unfortunately, it doesn't work that way. There is no way of knowing. We just have to let it play out & roll with it....the story of my life these days!!

I spoke with the dr. a few days ago & he increased the Zonisamide. Now, at 6:30am, Emmie gets 1 1/2 capsules. Every time we do an increase, I get sick to my stomach. I hate putting all this medication into her little body. I know it's helping her, but it's not easy for me. We just started the increase today. I pray it will get the seizures under control again.

Emmie has a follow up appointment with the neurologist in a few weeks. Aidan is at school & Emmie is napping. Time to get a few things done while I can.









Wednesday, July 14, 2010

MOMMY CONTINUES HER EDUCATION

After all that has gone on in my life thus far, I feel like I have earned much more than my Bachelor's & Master's degrees combined! My real education started after I had children. I want to share some information on Epilepsy with all of you. I feel it is important to know what Epilepsy is & what Emily might be experiencing when she has a seizure. With both of my children, I have committed myself to educating myself on their needs as well as the people around them. I've learned so much about reading an EEG, Infantile Spasms, MRIs, medication, synapses, the list goes on & on. I really don't need to learn anymore vocabulary words, please. UGH!

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain. Like an office building or a computer, the brain is a highly complex electrical system, powered by roughly 80 pulses of energy per second. These pulses move back and forth between nerve cells to produce thoughts, feelings, and memories.

An epileptic seizure occurs when these energy pulses come much more rapidly-as many as 500 per second for a short time-due to an electrical abnormality in the brain. This brief electrical surge can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge of electrical energy can cause: changes in a person's sensations or state of consciousness or uncontrolled movements of certain parts of the body or of the whole body.

Epilepsy is also known as a seizure disorder because the tendency is to have recurrent seizures.Epileptic seizures vary in severity and frequency, and even in the time of day they occur.While some people may experience no more than two or three seizures during their entire lifetime, others will have several seizures in one day.

EMMIE'S SEIZURES: Emily has approximately 10 seizures/day...visible ones anyway. I am starting to see a pattern of several seizures in the morning, very few in the afternoon/evening. Lack of sleep or interrupted sleep will cause Emmie to have more seizures. During a seizure, she jerks her head & arms abruptly...up to 5 or 6 times in a row. That is considered 1 event, or 1 seizure. The events are fairly short, lasting about 5 seconds or so. If she ever has a seizure that lasts 5 minutes, I have emergency medication to give her. It's been an adjustment for me to remember to carry her meds on me all the time. We went camping last week & I forgot them. That was stressful!

Emily can have a seizure at any time: sitting, playing, eating, when I'm holding her or when she's in her highchair or the bathtub. Once in a while she loses her balance. It is possible that Emily could outgrow her seizures, but only time will tell. My wish for Emmie is that her seizures completely stop NOW & that her development will not be affected anymore than it already has.

The kids are in bed. Time for me to hit the couch, break out the ice cream & watch
So You Think You Can Dance!

17 days til Eric comes home for his 2 week leave!! WOOHOO!! :)


Tuesday, July 13, 2010

CATCHING UP

FYI...These last few entires are about what has been going on the past few months. I am trying to get caught up to where we are now. Bear with me.

ANOTHER DIAGNOSIS?!?!

A few days later, I got a call from Emily's pediatrician & she said that Emily's EEG showed abnormal brain activity/seizure activity. She referred us to a pediatric neurologist. He ordered another EEG. After the second EEG, we went to see the neurologist. He was very concerned that Emily could be having Infantile Spasms. These are a specific type of seizure seen in infants & children. With these seizures comes developmental regression & a specific pattern on the EEG. These seizures can be very serious & need immediate treatment that can include hospitalization to administer medication, which can include a daily injection. I was so completely overwhelmed with this information. Before we went to the appointment I was thinking, "Emmie has seizures, just give her some medication". If it were only that easy!!!

The doctor decided to admit Emily into the Epilepsy Monitoring Unit (EMU) for 24 hours at the hospital. During this time Emily would have constant EEG & video monitoring. The goal was to catch as many seizure events as possible. Every time I saw an event I was supposed to press a button & a doctor or nurse would check Emily & also mark the EEG. The doctor would then compare the video with the brain activity on the EEG.

This situation was extremely overwhelming for me. I was worried about Emily. I wanted Eric with me! I needed his help making decisions for our little girl. I needed his support & I wanted us to go through this together. I was worried about Aidan. What was I going to do with him? Who would stay with him? He already worries about Daddy being away & gets nervous when he is away from me for too long. Luckily, Aidan was in school at the time so I didn't have to worry about him during the day. I am so grateful to my mom for coming to help out. Mema to the rescue! She stayed with me & Emmie in the hospital. She also stayed overnight with Emmie. I thought it would be best to stay with Aidan & get him to school the next day. The regular routine is always best for him. He was worried about his sister. I told Aidan that Emmie was getting a check up. I took him to visit her at the hospital so he could see that she was OK.

Once again, Emily had to have 22 electrodes glued to her head. This time the nurse used a paste & an air gun to get them on. It was very traumatic for Emmie, me & my mom. Our sweet, happy girl was screaming at the top of her lungs & crying her little heart out. It was heartbreaking to watch. It wasn't hurting her, but the noise terrified her & she felt some pressure on her head.

After Emmie was hooked up the nurse put a blue backpack on her. This contained all of the wires & helped to keep them out of Emmie's way. Emmie was able to move around, eat, sleep, sit up & we were able to hold her & put her on the floor. She looked like she had a head wound from the war with a big gauze bandage wrapped around her head & all of the wires coming out. My poor girl!! Emmie was still her happy self.

The hospital had a room where we could check out toys for Emmie. A clown stopped by for a visit & made a purple rose for Mommy. Therapy dogs came by to cheer us all up. In a small way, it helped to make the situation a little better.

During Emmie's stay, my mom & I found ourselves pressing the button more times than we wanted. TOO MANY SEIZURES!!! Emmie had about 20 seizures while we were there. We learned that Emmie was having more seizures than we thought. There were times when she would stare into space...seizure! Sometimes she made a snorting noise...seizure!! Sometimes she would make funny faces...seizure!!! not all of the episodes were visible. After consulting with 4 other doctors, the neurologist concluded that Emily was not having Infantile Spasms & diagnosed her with Epilepsy...a kick to my gut!! Another thing on my plate..the worry, the stress, more appointments, another diagnosis...dear God!!! WHY???? Why my little girl? She already has so much working against her. Please don't give her something else!!!!!!!

The doctor prescribed a medication for Emily, Zonisamide, 25 mg, once/day. The medication would hopefully get the seizures under control & ultimately stop them. It sounds so simple, right?!?! Little did I know this would only be the beginning of a very long process.....

Sunday, July 11, 2010

SOMETHING ISN'T RIGHT

About 3 months ago, Emily's therapists & I noticed that Emily was having periods of jerking her upper body, several times in a row. Her arms would jerk upward & her head would nod slightly. There didn't seem to be a trigger for the episodes. They would happen while she was sitting on the floor, in her highchair, in my arms, during therapy sessions, whenever, wherever. At first the episodes were fairly infrequent, but then started to increase to approximately 10/day. I took Emily to the pediatrician & after I described & demonstrated the episodes to her, she ordered an EEG (Electroencephalogram). The test would measure Emily's brain activity. The doctor was looking for any abnormal brain activity/seizure activity.

Within days, I was at the hospital with Emily getting her EEG done. Emily had to be sleep deprived for the test. The key was to get her to sleep during part of the test so they could record her brain activity while she was awake & asleep. I had to keep her up late the night before & wake her early the next morning. As always, Emily was a trooper!! When we arrived at the hospital, the technician hooked up 22 electrodes to Emily's head with a paste. Emmie was so patient. She laid down & I sat in a chair next to her, rubbed her hand & talked to her. She had a hard time getting to sleep so the tech swaddled her in a blanket & rubbed her cheek with a cotton ball, that did the trick.

During the test, the technician & I started talking about our families. I told her about Eric's deployment & my 2 children with special needs. I always feel it's important to share my story. I don't complain or want people to feel sorry for me. I always feel like we can all learn something from each other & the only way to do that is to listen & share. It's important for us as human beings to know that we are all going on the same journey, but on different paths. In one way or another, we all experience the same things.

Prior to the test, the tech had asked me how often Emily has these episodes & when they started. She was simply gathering information for Emily's file. In the middle of the test, she asked these same questions again. In my heart, I knew something wasn't right. Why would she ask me the same question again???

After the test was over, I asked the tech if she could tell me what she saw on the test & she said she couldn't. As she walked Emily & I down the hallway, she put her hand on my shoulder, gave a little squeeze & said, "You take care of yourself & that little girl". My heart sank & I knew something was really wrong with Emily. I tried hard to think that maybe I was reading into it. I am always the drama queen & I always look for the deeper meaning of things. Deep down, I knew something wasn't right with Emily.


Sunday, July 4, 2010

HAPPY 4TH OF JULY!

How many of you know the reason we celebrate the 4th of July? I asked my 8 year old nephew today & he said, "Fireworks". Good one, Drew. :) The holiday celebrates America's adoption of the Declaration of Independence on July 4, 1776. On this day, colonies declared their independence from Great Britain. I think many people forget the real meaning of the holiday & its importance in our history. It's much more than BBQs, parades, & a day off from work.

Today I took Aidan & Emmie to the parade with my sister & 2 nephews. It's become tradition for the Lautenschlager's to go to a parade for every holiday. :) We had a good time. The kids waved their flags & Aidan was mesmerized by the firetrucks & police cars. As always, I stood with pride. I am proud of my husband for his service to our country. I am also proud of my grandfathers & their service. I am proud of all of the men & women that have served & are currently serving our country. I am proud of this great country we live in. I am proud to be an American!!

Today is also our Anniversary. 6 years & still going strong!! I always say that Eric & I have lived through more in 6 years than most people have during their entire marriage. During these 6 years, I have spent more than 2 years without my husband (counting deployments & military duty time). On this day it is especially hard for me. It's hard to be alone. I talked to Eric earlier today. It was so good to hear his voice. It's been 2 weeks since I've talked to him. We are all getting anxious for him to come home for his 2 week leave at the beginning of August. As we get closer to the date, I start to feel like a girl in high school waiting to go on a date with her boyfriend. :)

July 4 is a special day for our family. Of course, it is special to us because we are a military family & we honor our country. It's also the day that we celebrate our marriage & the beginning of our little family. I miss Eric & I am feeling a little sad, but it's OK. We are still husband & wife & a family. I am so proud of us & our family.


HAVE A SAFE & HAPPY 4TH OF JULY!!

Saturday, July 3, 2010

TIME TO CATCH UP...EMMIE TURNS ONE

Wow! It's been so long since I've written. Life has been extremely hectic, to say the least!! The stresses of the day to day routine along with the emotional stress has been catching up with me. There are days when I want to run away from it all, but somehow I manage to keep on going. My little boy & girl give me the strength. One look at them & I know I have no other choice than to keep on going. This Mommy runs on Dunkin' too!! :) Those of you that know me know that I go to Dunkin' Donuts every day, sometimes twice a day for my 'lil pick me up.....an Iced Caramel Latte Lite...even Aidan knows what Mommy likes!) Whatever works, right?!?!

So much has been going on. I've decided to divide it into several different entries for easier reading. Enjoy!

Emmie is now 15 months old!! She turned 1 on Easter. It was a very special day. I felt so much on that day. I was so happy & excited for my girl's special day. I felt proud to have her as my daughter, proud of what she had accomplished & how far we had come as a family. The days leading up to Emmie's birthday were difficult for me. I found myself replaying her birth in my mind, Eric missing Emmie's birth, learning about her diagnosis, the anger, disappointment, sadness...it was hard to escape it. I missed Eric like crazy & I felt sad for Emmie that her Daddy wasn't there to celebrate.

We had a party for Emmie with lots of family & friends. It was a great day! Emmie wore a pink & white party dress with butterflies on it. She looked so sweet!! My mom gave Emmie a very special gift for her birthday. Years ago, my Grandma Joan (my mom's mother) gave me a story called, "Lacey's Pink Party Dress". I think her mother or grandmother passed it down to her. It is the story of a pink party dress that comes to life with the other clothes in the closet. The party dress wants Lacey to choose it to wear to a birthday party. It's very cute & over years it has changed. Grandma Joan personalized it for me. It is so special to me. My mom lost it over the years, but recently found it. She gave it to Emmie on her birthday. Having that connection with the women in our family is a special gift. I can't wait to tell Emmie the story when she gets older.

Emmie loved her cake & playing with her little friends. It's hard to believe she is 1 year old. It's been an amazing journey filled with so many emotions. I am grateful for each & every moment with my girl...Emily Grace, Emmie, Emmie Gracie Girl (as her brother calls her), my Lovie. I am excited to share the rest of the journey with Eric, Aidan, Emmie & all of you.
Who knows where it will take us?

MORE TO COME!!