Questions About Why I'm Not Posting

My darling sister asked me the other day why I haven't posted in so long.  Actually, her exact words were, "What's up with that?!" 

The fact of the matter is that my sweet girl is doing quite well.  The last time we had documented seizure activity was February.  She's progressed to second grade, and is doing quite well in her class.  In fact, in her parent-teacher conference, her teacher expressed that she is doing so well that she's on grade level for reading, and is progressing nicely in math.  We're all so encouraged this year.

Tomorrow starts off Epilepsy Awareness Month.  For an epilepsy advocate, like myself, it's arguably one of the most important months of the year.  You want to raise awareness.  You want to make sure EVERYONE you interact with is aware of seizure first aid.  You want to chase away stigma. 

I'm in the unique position of being the student council sponsor for my high school.  We've made it a project of ours to raise epilepsy awareness on our campus by posting seizure first aid around the school, and selling epilepsy awareness bracelets.

Please do what you can to continue to raise awareness where you are.  The world is not aware enough about epilepsy, what it is, and what it means for us as parents/friends/family members of people with epilepsy.

A secret

Would you like to know a secret?  On August 22nd, it will be seven years since Liz had her first seizure. 

Continued Normalcy

I'm a little nervous about how normal things are with my family right now.  Liz continues to impress me with her handling of the summer routine change.  Although, at this point, one could argue that we've created a summer routine, and that's the reason for the excellent transition.  I'd have to agree, honestly.  Even the most basic routine helps her with anxiety, and she keeps a fairly even temperament.

One of my fellow teachers is going through a situation with her husband in which he is essentially being diagnosed with epilepsy.  Another mutual friend was updating me on the situation, and she remarked that she couldn't help but think about Liz when talking to our other friend.  The husband had suffered a black out while driving, and that got her to thinking about what Liz's life will be like as she gets older.  Will she drive?  Will she go to college?  Will she have children?  I replied as I always reply:  "I have no idea, but I really hope so."  Let's be honest, though.  She probably won't drive because we have had terrible experiences with seizures returning when her meds dip below therapeutic levels, and based on that fact, no state is going to give her a license.  I hope she goes to college, and I want that to be her decision.  The mom in me will have a difficult time letting her go, though ("Please, Liz...you can go there and live at home."  "Mom, I'm 35!!  Let me go!!").  As for the children?  Well, she's eight years old.  I'll worry about that later.

Liz and I are visiting family next week, so I'm sure I'll update my blog about how well she handled the trip.  It should be really interesting.  Have a great day!!

Over A Month...

It has been over a month since I have last posted.  In that month, I received the scores of my high school students' TAKS tests, negotiated the mine fields of public education, lived through school being out for another year, taken Liz to the neurologist, and started teaching summer school.

The fact of the matter is that nothing terribly interesting has been happening.  I had a week off between the end of school and the start of the first session of summer school.  In that time, I took Liz to the local splash pads several times, signed her up for summer reading, and completed several art projects with her.  We also started an herb garden that's responding well to us.

Her neurologist appointment went well.  He wants us to continue on as we've been going, and keep up with the behavior therapy appointments.  Nothing changed in that regard.

Liz had a behavior therapy appointment last week, and since she's negotiated the start of summer vacation so well, we're only doing appointments once a month.  We've established a very tentative schedule, and it seems to be working for us thus far.  It's a nice change from the chaos that was our lives for a few months.  She's so much more calm, and she's been feeling less anxiety than before.

She's been engaging children at the splash pads, and playing with them without too many issues.  I confess that I got a little teary-eyed when I saw her playing with a little girl last week, and being completely comfortable while doing so.  I was so proud of her.

I'm going to make an attempt at keeping up with this blog this summer.  Since most days (outside of summer school) I rarely open up a laptop, it might be a little more challenging than it is regularly. 

Have a great summer, everyone!!

Thief

When your child is diagnosed with epilepsy, the doctors give you a speech.  It usually involves being told that:

1. Your child has epilepsy.
2. We're going to put your child on medication.
3. Most likely, everything will be fine.

Number 3 is a lie.  Rarely is everything "fine."  Most of the time the first medication isn't effective in controlling the seizures.  When you finally find a medication (or mixture of medications) that work, you face the side effects of them.  You start to notice that your child can't do the math homework that just last week she was capable of doing.  Your normally meek and mild-mannered little girl suddenly has fits of temper so violent, you fear for her (and your) safety.  One day walking outside in sweltering heat, you notice your child hasn't so much as broken out in a sweat and is pink with heat.  Upon consulting the medication's list of side effects, you realize your little girl doesn't sweat anymore. 

All of these things you're willing to accept because your child has reached full seizure control, and that is more important than tantrums, cognitive slowing, or lack of perspiring.  After awhile you work around the side effects.

• Cognitive slowing?  She's allowed more time to work out math problems.  You even have her school put it in her IEP.
• Violent fits of temper? Vitamin B-6 (50 mgs twice a day) will offset most of the mood swings. 
• No sweating?  No problem!! You start to carry around a battery-powered fan that sprays water.  Bottled water takes up permanent residence in your purse, and you begin to carry a damp rag when you venture outdoors.

It becomes your normal.  You don't even question it after awhile.  It just is.

Then something happens that makes you realize how much seizure disorders take from your child and your family.  It steals it away from you, and you don't even realize that it's being taken.  From the first seizure on, it steals bits away from your child...memories, parts of her personality, her ability to take care of herself.  The ultimate possibility (and of course, fear) is that it's going to take a life.

Doctors dont explain to you about Sudden Unexpected Death in EPilepsy (SUDEP).  I'm sure that if I went to my daughter's doctor, and asked him outright about it, he'd have a conversation with me about it.  Fortunately, I don't need to.  I know all about it.  I've researched it.  Epilepsy can steal a life at any point.  A person can have controlled seizures for years, and out of the blue have a seizure that ends up killing him/her.  It is my greatest fear as a mother of a child with epilepsy.

Epilepsy steals your peace of mind, your child's health, your child's peace of mind...it is a thief that sneaks up on you, and strikes when you least expect it. 

I belong to a network of mothers that have children with disabilities.  One of the mothers in that network lost her daughter to epilepsy on Saturday.  As much as you tell yourself that her body isn't in pain anymore, and she's in a much better place, as a mother, you can't help but want your daughter with you.  No mother should ever have to face the death of her child.  It's not something you come back from once it has happened.  My thoughts and prayers are with her and her family.

My Motto

You can tell that I'm a history teacher.  This poster was created by the British government in 1939 as a way to boost morale during World War II.  Every time I see it, I think about how appropriate it is for just about everything, so it's become my motto.  You can get through just about anything life throws you just by doing this. 

It's probably cliche, but it's true.  Just sayin'.

Birthday Parties

Liz's birthday parties were a huge success.  Three little girls from her class and two friends of the family came to the first party.  It lasted just over an hour and a half, which by the way is just enough time to get everything done.  Liz handled it like a trooper, and except for a fifteen minute period where she went non-verbal, she did very well.  They played in her room, and I discovered bunk beds are a huge source of excitement to little girls.  Every time I went in there, three of them were on the top bunk.  It was cute.

They made tiaras, which was awesome.  I totally am patting myself on the back for thinking of that.  Target is the source of all cool birthday party things.  We were also going to do manicures, but it didn't work out.  After that, we did the pinata, and had pizza and cake.

Every single little girl got her Zoobles.  Zoobles are Liz's new favorite toy.  She has been lobbying for them every time we enter a store that sells toys.  Yesterday, her dreams were fulfilled.  She was so excited.

The second party was meant for the adults in Lizzie's life that wanted to celebrate with her.  About ten people came, and hung around for about an hour and a half.  That was just enough time, and you could tell Liz really felt comfortable.  I'm so thrilled that so many people love her so much that they wanted to spend her special day with her. :-) 

Next year, only one party.  I AM SO EXHAUSTED TODAY!!!!!!  Liz is still happy, though, which is really all the matters. 

Yay for a great birthday party experience!!! 

Liz's Birthday

Today, my very awesome kiddo turns eight years old.  Normally the day would have started with much celebration, and a rousing rendition of "Happy Birthday To You," but not today.  No, today started with me dragging her out of bed by her feet, which is actually normal.  Then she got dressed, and I pinned her "Birthday Girl" ribbon to her chest.  Again, she was fine.  The big problem came when I went to brush her hair and teeth.  Sensory issues overload.  I had to hold that child down to do both.  There was much screaming and fightingand kicking and scratching.  After nearly half an hour, I managed to get her ready for school.  Ten minutes after that, she was fine.

Her sensory issues are just getting worse, and I honestly don't know that her behavior therapy is helping with that.  I'm just at a loss there.  I know so much of it is not her fault, but in the same respect, she can't keep going on like this. 

This weekend is her birthday party.  I've sent out two rounds of invitations in the hopes that someone will RSVP.  So far, no one has.  I'm really hoping that people just aren't calling, and they'll show up.  On the upside, after the little girl party, there's going to be a separate party for all the adults in her life that want to celebrate with her.  I KNOW that one will be a success. :-)

Have a great day, everyone.

Birthday Parties...Who Do We Invite?

I mentioned in my last post that Liz will have a birthday at the end of this month.  Naturally, I am planning her birthday party.  We're going to do a Fancy Nancy theme.  Very posh.  I'm excited for it, and I know Liz is super excited for it.

The thing is, she's terrified of birthday parties.  Actually, let me clarify that statement.  She's terrified of the number of kids at parties, and especially the singing of "Happy Birthday To You!!"  Her senses get overloaded, and inevitably, there's a meltdown.  And don't even get me started on what happens when we're in a restaurant, and someone there has a birthday.  If we're lucky, we get fair warning, and we excuse ourselves.  If we aren't...well, she becomes nonverbal for awhile, and we end up leaving the restaurant sooner than we planned.  One night, there was an astounding FOUR birthdays, and I thought we were going to have to sedate her. 

Anyway, most of our last behavior therapy appointment was spent discussing how best to get her through this event.  She definitely wants to have a party, so not having one isn't an option.  After forty-five minutes, we came up with a plan:

1. We won't invite more than five to seven young ladies.
2. We won't sing.  At all. 
3. We have an escape plan if she becomes overwhelmed, and shows signs of having a melt down.
4. We have a schedule that we inform her of, and go over with her repeatedly before the party.
5. We emphasize the FUN.
6. We make her involved in every single aspect of the planning of the party.

Friday night, we went to Target, and picked up the invitations, and she picked out a tiara making kit that we can do at her party.  I have such high hopes for this little event.  Say a special little prayer for us, will you?

On Being a Parent and Venting

At the end of this month, Liz will be turning eight years old.  I adore my child with every inch of my being.  She is the most precious gift that I have ever been given.  What I am about to write doesn't change ANY of that, okay?

Being a parent is hard.  Being the parent of a special needs child is extremely hard.  Parents of children that don't have special needs can freely vent about the stress of being a parent, and NO ONE thinks anything of it.  However, the second you add in a child with special needs, that's taken away from us.  Somehow venting about the stress of doctors' appointments, schools, etc. makes us "bad parents" to some people.  We aren't bad parents.  We're ordinary people with extraordinary worries.  For some of us, our lives are punctuated by doctor appointments and therapy visits for our children.  Mix that with stresses about our childrens' schools and learning problems.  We're a stressed out group of people.

We deserve to be able to take some time for ourselves.  We deserve to be able to say, "Wow!!  My family is driving me crazy today!!" and not have people look at us and judge us as bad parents.  We're not complaining about our KIDS; we're complaining about our STRESS!!

And just because we're parents of special needs children does not mean that we aren't human.  We are going to get frustrated, and angry.  We're going to need people to listen to us, and not judge us for that.  It doesn't mean we don't love our kids.  It doesn't mean we hate our lives.  I love my family.  I love my life.  At one point a few years ago when things were terrible with Liz's health and school for her really stunk, I was bemoaning the situation, and just really feeling sorry for myself.  My sister asked me, "If you could go back and make Liz healthy, would you?  Would you change anything, Marisa?"  My answer was, "Absolutely not.  She is perfect the way that she is."  Sometimes, though, the stress kicks my butt, and I need someone to listen to me.

That Time I Felt Like a Bonehead.

You know, I always think of things I should write about on my way to work.  I have a half hour commute to the school where I teach, and as I make that drive every morning and afternoon, my mind wanders.  Inevitably, I end up thinking about Liz, and our lives as they are now.  At some point, I have a thought, and I think to myself, "I should write about that for my blog."  Then I get to school or get home, and I get busy with my responsibilities.  I usually end up forgetting my brilliant thought until the next commute, and then the cycle starts all over again.

This morning I did think of something, and instead of forgetting about it, I remembered to post it to the blog.  WOO HOO!!

So, I was going over Liz's neuropsychological evaluation from three years ago.  (Please keep in mind that three years ago, I was NOT the advocate that I am now.  I was a young mother facing issues with her small child, and I had no idea which end was up.  I could handle her seizures with no problem, but as I was facing her developmental issues and what they meant, I was lost.)  Anyway, I was reading her evaluation, and I got to a place that referenced her having Pervasive Developmental Disorder-Not Otherwise Specified.  I have a clear memory of reading that, and thinking, "I need to look that up."  Right after we got the evaluation back, Liz was placed in the hospital, and I completely forgot to do my research.  Last summer, I picked up a book on children with austistic spectrum disorders, and there was a very specific chapter on Pervasive Developmental Disorder.  Basically, Liz is autistic.

I felt like a bonehead.  I mean, really...a great big ol' bonehead.  I talked to my sister and The Husband, and both told me that I shouldn't beat myself up because I was so very overwhelmed.  Yeah, that's true, but the mom in me is just a little bit angry with herself for not researching it sooner.

Now, what does this fact change? 

Honestly?  Absolutely nothing.  I wouldn't change how we raise her at home.  I wouldn't change her IEP at school.  There's not a special "austic doctor" that she could go see.  Nothing has changed.  Period.  We're all just a little more aware now, and while that's great, again...doesn't really change a lot.

 

Absolutely NOTHING to Report

There's been a complete and utter lack of posting lately, and the reason behind that is everything has been calm around my house.  It's such a nice change from the norm.

I will share a bit of good news, though.  Liz won the citizenship award for her class for the last six weeks of school.  She brought home a lawn sign, which we're now proudly displaying.  VERY proud of her. :)

We have behavior therapy tomorrow.  I'm sure we'll be discussing Liz's anxiety from me leaving on the student council trip, and how well she handled that.  I was very proud of how she managed her separation anxiety, and how far she has come since then.  She is really turning in to a very grown up little girl.  :)

Home Again, Home Again...Tra, La, La, La,

I am so overwhelmingly happy to be home.  The Husband and Liz picked me up this afternoon after several hours on a yellow bus.  I hadn't seen them since about 6:15 Sunday morning, and let me tell ya...that was TOO LONG!!  I missed my sweet girl and The Husband.

Let me just say that I am exhausted, but it is that sweet, happy exhausted.  I spent the last 3 days with 4,500 high school students.  Sometimes I was annoyed, and sometimes I was tired and short tempered.  When it came down to it, I enjoyed the heck out of my time at the state convention, and honestly, I would do it again next week.  I work with a really great group of kids.  Teenagers get such a bad rap, but honestly, they're some of the coolest people on the planet.

Sadly, our sister school lost their bid for the vice president's position for the State of Texas.  I know they were bummed because they worked REALLY hard, but I also know that they learned from their experience.  They'll approach it next time, and I have every confidence that they'll win it. 

Like I said yesterday, I still consider it a win.  They educated 4,500 teenagers and a couple hundred adults about epilepsy.  That is an accomplishment.  One of their sweet students looked at me as he was getting off the bus, and said, "Thanks for letting us use epilepsy."  I said, "Thank YOU for wanting to do it."  They were awesome.

So, where do we go from here?  Well, I'll keep writing this blog, and doing my part for advocacy.  I'm pondering what we'll do for advocacy next year for epilepsy awareness.  The potential is there, and it will be awesome.

I'm saying awesome a lot tonight.  Awesome.

What a Great Day

Our sister school did an amazing job with their campaign skit this morning. It was emotional, and informative. Sitting in the audience, you could tell that people were affected by the story told by the video. Tears were flowing all around me, and some of them weren't even from me!!

We won't know the election results until tomorrow morning, but even if they lose, they can be proud of the fact that today they educated 4,500 students about epilepsy awareness. That, in and of itself,is a huge win. I am so proud of them, and what they've accomplished today!!

Tomorrow is a Very Big Day

For the next few days, I'm at the student council state convention in Arlington, Texas. My school's sister school is running for the state vice president position on an epilepsy awareness platform. I was interviewed by their student council a few weeks ago for a video that will be used during their skit tomorrow. Guys, I am so excited. At the very least, tomorrow a couple of thousand kids will be educated about epilepsy awareness. If they win...it gets bigger than that. I've got chills just thinking about it. The possibilities...so excited.

Silly the Worry Worm

Today Liz had her second behavior therapy appointment, and I brought up the fact that she tends to have severe separation anxiety when it comes to me.  I'm going out of town this weekend for a student council function, and I'm going to be gone for two nights and three days.  She has been outright begging me to not leave her, and crying that she wants to go with me.  I've tried explaining to her that she can't go, why she can't go, and that The Husband will be there to take care of her, but she is definitely not listening. 

The doctor asked her why she didn't want me leaving her, and she told her that she was afraid of being alone.  The doctor did manage to get it out of her that she wouldn't really be alone because The Husband would be there to take care of her.

To help Liz manage her anxiety, the doctor had her draw a Worry Worm.  Any time Liz starts to feel anxiety or worry about me not being with her, she is to tell the Worry Worm that she doesn't need to worry because her mommy loves her and she is always taken care of.

Liz's Worry Worm is bright pink with purple spots.  He's wearing a brown hat, and he is flying a blue kite.  She made sure to draw a tree next to him with a door because that's where the Worry Worm works making buttons.  We ended up naming him Silly the Worry Worm because Liz realized that sometimes it is silly to worry.

Tonight we have to find a place for Silly the Worry Worm to hang so that Liz can have her regular conversations with him, to let him know that she isn't going to worry anymore.

Knut the Polar Bear Dies of Epilepsy

Knut the Polar Bear died of epilepsy.  What a sad story.

Pumpkin the Epileptic Chihuahua

Ladies and Gentlemen, Pumpkin the Epileptic Chihuahua

Telling Liz About Her Seizures

After Liz's last seizure, I struggled with how best to tell her about what was happening to her.  The last one hit just over a month ago. She'd been at school, and she was with her speech therapist when she quite suddenly fell out of her chair and began to have a seizure.  It was relatively quick, and it was finished before the nurse even had a chance to make it down there.  The Husband picked her up from school shortly afterwards. 

That night, Liz and I were talking about what had happened that day, and she was quite insistent that she had only passed out.  I explained to her as best as I could what happened, and I even showed her a little video.  I told her that what she has is called epilepsy, and that's why she takes so many medications in the morning and at night.  I thought she had gotten it until a few days later when we had to have the conversation all over again.

Fast forward to spring break two weeks ago.  I heard the most awful racket coming from behind the chair I was sitting in, and I got up to see what it could be.  It was one of our chihuahuas, and she was having a seizure.  She's actually had them for years, and they only really hit her about once or twice a year.  However, when they hit, it's a 20-30 minute ordeal.  Anyway, I quickly grabbed her, and held her carefully.  Her eyes were completely dialated, and if a dog could cry, then she would have been...tears were just pouring from her eyes.  The entire time this is happening, Liz is sitting on the couch, watching.  When our dog, Pumpkin, stopped seizing, she curled up in a ball on a blanket, and slept for hours.  Then, she was fine. 

Later, Liz comes to me, and she says, "Momma...when Pumpkin was shaking...is that what I have?  Is that epilepsy?" 

I said, "Yes, baby, that is exactly what you have."

She said, "OH!!  Well, that's not bad, especially since I have you to take care of me like you did her.  You did a good job, Mom!!"

And now, Liz gets it.  She understands her diagnosis, and why she takes her pills in the mornings and at night.  Sometimes she says, "Momma!  I didn't have epilepsy today!!  NO seizures!!"  It's so stinkin' cute when she says it.

So, thank you, Pumpkin the Epileptic Chihuahua!! Because of your medical condition, Liz now understands her diagnosis.

A Book Recommendation

Over Spring Break, I picked up a book called "Shut Up About Your Perfect Kid."  I'm not really sure why I picked it up, but for some reason, it called to me.  I found that when I was reading it, I couldn't put it down, and I was literally laughing out loud.  The authors are Gina Gallagher and Patricia Konjoian, and they're sisters, both with daughters that have special needs.  They simply wrote about their experiences with diagnosing their children, adapting to their new lifestyles, finding the right treatments for their kids, finding the right school environment for their kids, etc.  I don't think I have ever laughed so much while reading about a subject matter that was so sad.  In the end, it ended up being hopeful and supportive, and it is everything a book about raising a child with special needs should be.

I believe every parent should read this book.  Not only will it be helpful in accepting the diagnosis your child is facing, but it could also help parents to accept when their child isn't exactly how they expected they would be.  Embrace the imperfection because there is beauty in it.  Every child is a miracle, and focusing on what could have been will not help you or your child live your life. 

I've emailed the authors of the book, and I've joined their facebook group.  I seriously suggest you do the same.  It's a wonderful support group, filled with humor and unconditional love. 

Laughter

Today we had to get Liz's 100 mg dosage of carbatrol refilled.  The Husband called it in, and went to go pick it up.  We spend so much time getting meds refilled that we have become friendly with the pharmacy staff.  Today, Ben the Pharmacy Tech talked to The Husband about The Husband's taste in music, specifically his love for Nine Inch Nails.  The Husband called me, and the following phone conversation ensued.

Me: Hello?

The Husband: Hey, I got her meds, and Ben the Pharmacy Tech says, "HI!"

Me: Hi, Ben the Pharmacy Tech.

The Husband: Yeah, he knew about my love for Nine Inch Nails.  At first it confused me, but then Ben said, "Yeah, I was looking forward to her coming in because we always have the best conversations, but it's cool that you're here.  So, you like Nine Inch Nails and Trent Reznor?"

Me: Laughing hysterically.

Our "normal" is making friends with the pharmacy staff, and them knowing details about our likes and dislikes as far as musical tastes.  Because of the constant check of "Can you varify her birthday for me?", they're more familiar with Liz's birthday than our friends and family (close friends and family excluded!!).  Once upon a time not that long ago, I would have found that depressing.  Because when you think about it, it kind of is, but now I find it funny.  And hey, there's always room for more friends in your life, right?  And if their interest puts a smile on my face, even for just a little while, then I kind of think it's awesome.  Over the last two and a half years, we've gone from being pharmacy staff and customer to friendly acquaintances.  That kind of makes me happy. Plus, the Wal-Mart Pharmacy should be thrilled that they have such an awesome, welcoming staff, especially with Ben the Pharmacy Tech.

Behavior Therapy

I took my Spring Break, and just didn't do anything but enjoy the time off.  That meant absolutely no blog posts.  :)

Last week, Liz had her first behavior therapy appointment.  Going in to it, Liz was very nervous.  She's very suspicious of doctors as a general rule.  On Wednesday when I told her that she would be going to the doctor the next day, I had to make sure it was very clear to her that there would be no shots, IVs, or any other medical tests.  I promised her that doctor would only talk to her and ask her questions, and I would be with her every single step of the way.

When we got there, she was very nervous, clinging to me and hiding her face.  She noticed that the doctor had a lot of toys, and she was impressed.  She still wouldn't leave my side, though. 

The doctor asked all the usual questions about her development, what the issues were, etc.  I explained about Liz's rages, and she offered up some advice on how to handle them.  All in all, we were there just over an hour, and I left feeling optimistic about what we would accomplish in future appointments.  Better than that, Liz liked the doctor, and she is excited about her next appointment.

I had the opportunity to use the suggestions for Liz's rages on Saturday, and while the rage lasted just as long as the previous ones, it wasn't as violent.  The next day was the best day she's had in a LONG time.  It was so nice.

Rages

My daughter has always, always had sensory overload issues.  In the past, it's only really manifested about once or twice a month, and usually it was in correlation with her being off of ADHD meds.  About three years ago, her episodes were especially violent, so we had a video EEG done.  She had a rage while being monitored, and all that was shown on the EEG was abnormal brain activity.  I had a moment where I kind of thought to myself, "No kidding...jeez...wish I had thought of that!!" 

After she started her ADHD meds, her rages tapered off, and like I said, only really manifested when she was off of her meds.  Since Christmas, they're becoming more frequent again, and now they're coming once, sometimes two to three times a day.  They're violent.  Last weekend, while she was having one, she kicked me in the head, and started hitting and scratching me.  Yesterday, she had one and bit me.  This morning, while in the middle of one, she started slamming her head in to the wall over and over again.

I've been documenting all of this, and I called her neurologist.  He wants her to start behavior therapy.  I think this is a wonderful, amazing, appropriate idea.  The best part?  I didn't have to fight with the insurance company to make it happen!! (Watch...I'll say that, and then the insurance company will suddenly become an issue)  Her first appointment is next week during our spring break.  I hold so much hope that this will be the help we need.  I know the answer won't come immediately, but I'm so hopeful that over time, it will be the answer to our prayers.

Another Interesting Article

I stumble upon the most wonderful articles because I follow the Epilepsy Foundation on Twitter.  I came across this little gem yesterday.  It's a little scientific, but I'm the least science-minded person I know, and I followed it relatively well.  Enjoy!!

Brain Molecule Found to Protect Against Seizures

Amazing article in regards to epilepsy...

I read this, and I had an "A-HA!!!!" moment.  Gosh...if this is the direction that epilepsy research is taking...so many amazing things could come from it.

Epilepsy as a Spectrum Disorder

How very true...

"Life is not what it's supposed to be.  It's what it is.  The way you cope with it is what makes the difference."

I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!"  I know I'm guilty of it.  How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing?  Too often...I can't help it sometimes.  I just want her to be healthy.

It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures.  I'm just not that powerful.  What I can change is how I handle it, and what I do about it.  For me, I go into what I lovingly call, "Crisis Mode."  I handle the emergency as best as I can, and then when all is said and done, I cry.  Then we move on.

One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy.  If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won.  I've slayed the dragon.

Epilepsy isn't going to ruin our lives.  It has tried over and over again.  It has tried to take away my daughter, but I refuse to give her up.  It can't have her.  She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me.  It can't take away her quality of life.  It can't take away her smiles and her laugh.  It can't take away her love.  And every single one of those things is a victory.  Every time she smiles...every time she says, "I love you, mama"...it's a win.  We're winning our battle every single day.

Maybe our lives weren't supposed to be this way...maybe they were.  I'm not the one to make that call.  But you know what?  We're handling this, and we are absolutely making a difference.

Wonderful Quote

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow. ~Mary Anne Radmacher



Doesn't that quote just give you the shivers?  I love it.  It's so very true. 

Just...amazing.

I'm writing this from my kitchen table after one of the best days I've had in awhile.  It struck me today just how much work I've put in to epilepsy awareness, and how awesomely it is paying off.

Today we had our district convention for student council in Corsicana, TX.  Our sister school, Killeen High School, was running for a district position using their epilepsy awareness platform.  Their theme, "Step Up for Epilepsy Awareness" was perfect, and their presentation warmed my heart.  Honestly, I got a little teary eyed.  They were just awesome.  Later, their sponsor told me that it was just a small portion of what they had planned for their state presentation, and that they still had some work to do.  You know what I say?  Awesome.  Seriously, just...awesome.  I love that 40-50 kids that six months ago had no idea about epilepsy are working quite tirelessly perfecting a performance that, if nothing else, is going to make people more aware of this nasty condition.  I. Love. It.  It's moments like these that I feel like we might just win our war against epilepsy.  I will forever be thankful to their sponsors for taking up this fight.  You guys have earned a place in my heart.

In other news, we had to add another 100 mgs of Carbatrol to Liz's morning medications after the seizure last week.  I feel like we're on the right track for seizure control through this series of medications.  It could be so much worse than it is, and I'm thankful that she's responding so well to Carbatrol.  Although, I could live without the mood swings.  They are nasty.

Side note: I lived in England eleven years ago, and went to school there for a semester.  I met some of the most amazing people there, and I've held them very close to my heart in the years since.  My professors/house parents were some of these wonderful people, and they have a sweet daughter that over the weekend, she experienced three seizures.  Their entire family has kind of been thrown into the deep end of this mess, and they're doing their very best to stay afloat.  Please, keep this sweet family in your thoughts/prayers.  I know they appreciate it.

I've added a few links that you all should check out.  My favorite is a link to the website/blog of Paulette George.  She wrote a book called "Good Morning, Beautiful" about her daughter and their experience with epilepsy.  If you do nothing else today, please go to that website, and read her blog.  It hit so close to home that as I was reading it, I thought to myself, "How does she know our story?"  I emailed Paulette, and she kindly responded to me.  What a sweet soul.  Thank you for sharing your experiences, Paulette. 

I'm going to go to bed while I can fall asleep with a smile on my face.  I love you all.

Another One...

Liz (my daughter) had another seizure yesterday.  That's three in just over a month.  I know a lot of parents with children that have epilepsy would commit a crime to be able to only have three seizures a month.  Truly, three seizures a month in comparison to over a hundred a day seems relatively minor.  The thing is that it isn't minor to us.  Up until a month ago, it had been three years since her last tonic clonic seizure.  We had gained so much in that time.  She learned how to read and count.  Her fine and gross motor skills had improved so much that she was released from occupational therapy.  She was doing awesome.

Last night while we were reading, she struggled with words that she knew.  It could have been a postictal cognitive slowing, but what if it wasn't?  What if it is the beginning of a loss of skills that she's gained?  It's a scary time.

Sometimes...

Sometimes when things are really terrible with my daughter's health, I imagine myself as a knight, and her epilepsy as a dragon.  Usually in this fantasy, I look like Alice from the new "Alice in Wonderland" movie.  I have a sharp, shiny, dangerous sword, and I'm looking to defeat this huge, angry, scary dragon that's threatening my daughter's life.  Because it is my fantasy, I slay the dragon, and my daughter is safe and healthy. 

Don't you wish you could will your imagination into actually being reality?

Catching Up

My heart is heavy today.  Nothing terrible has happened, but I'm just so....sad, I guess would be a good word.  I'm yearning for the normalcy of our pre-Christmas lives.  Ever since my daughter was hospitalized for the kidney stones, I feel like we've been in a tailspin, and nothing I'm doing is helping to stop it.

The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating.  When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean.  She hits.  She kicks.  She bites.  She acts out and tries to cause pain just because she can.  When she's "normal", she realizes why her actions are wrong, and she feels immense guilt.  This morning getting ready for school was particularly difficult.  She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her.  After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy.  I don't want to be mean.  I can't help it, though.  I think there's something wrong with my brain.  Is it sick?"  I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me. 

My daughter is one of the sweetest souls ever put on this earth.  This is so much harder than it has been in the past because she is aware of what is happening to her.  She's confused, and no amount of explaining has helped.  For the first time in a long, long time, I don't know what to do.

On top of everything else, she still isn't gaining any weight.  I've been calorie loading that poor child for weeks, and NOTHING has changed.  I'm afraid she needs to go back on medication to make her hungry.

As a side note, I've requested that we see a ENT specialist to see about having her tonsils out.  Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result.  Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again.  It's just not healthy any way you look at it to continue on this path.

I'm just tired.  I feel like every time we get back on our feet, they're kicked out from under us again.  She's been through so much, and I can't help but wonder when enough is finally going to be enough.

Gaining Weight

Being the mother of a child with epilepsy puts me in a unique position.  I mean, that should be fairly obvious, right?  I'm talking about beyond the seizures here, though.  My daughter doesn't gain weight.  In the last two years, she's stayed at right around forty-five pounds.  Two year old kids weigh more than that.  We've tried to correct this problem, too.  About a year and a half ago, my daughter's pulmonary specialist was concerned that she had cystic fibrosis because of her breathing issues and the fact that she was underweight.  She was tested, and thankfully, it came back negative.  Then we tested for a gluten allergy, and that came back negative, too.  Finally, we just decided that her medications were affecting her ability to gain and keep weight on.  She went on Megace, which was very effective, but it's not a drug that most pediatricians will prescribe for children.  She was only on it for a few months, and she gained fifteen pounds.  As soon as she went off of it, she began to slowly taper down in weight until finally, she was back at forty-five pounds.  We just kind of lived with it.  I kept her off of her ADHD meds on the weekends, and calorie loaded her on those two days.  During the week, I supplemented her diet with Boost with Protein, so that I knew that she was getting all the daily allowances for the important stuff her body needs. 

When she was in the hospital over Christmas, she lost two more pounds.  I finally decided that I'd had enough of her not being able to gain weight, and I scheduled an appointment with a nutritionist.  She talked to me about calorie loading my daughter all of the time, and what medicines are effective for weight gain.  One of those is Cyproheptadine, which she has been on before.  Since it is an antihistamine, she had wonderfully clear breathing, but it didn't do anything to increase her appetite.  Besides that, I'd like to avoid drug intervention at this point.  She's already on so much medication for the seizures, and I don't want her to be reliant on a pill to make her hungry.  I want to exhaust every avenue before we just add another medication.

So, I'm calorie loading her.  I'm taking Pediasure 1.5 Cal, and add two tablespoons of whole cream and chocolate syrup.  A 350 calorie drink now holds about 600 calories.  I'm giving that to her twice a day, plus I'm adding anything I can think of to her diet.  If she's hungry for it, then I'm giving it to her to eat.  I realize this isn't exactly breeding healthy eating habits, but I'm talking about a kid that would rather eat a Caesar salad than a candy bar.  Those healthy eating habits are already there, and I doubt that calorie loading her is going to undo that. 

Do you see what I mean about epilepsy not just being about the seizures?  It's so much more than that. 

What Morning/Evening Meds Look Like For Us

Morning Meds

Night Time Meds

Maintaining status quo

One of the ways I'm currently struggling with my daughter's recent health struggles is that I'm realizing how hard it is going to be to maintain baseline health. I've said it before and I'll say it again: the last three years has really lulled me into a false sense of security.

Yesterday my daughter had an appointment with a nutritionist. She has a horrible time gaining weight because of all the medications she is on. For example, the carbatrol increases appetite, but the focalin decreases it. On the weekends, I try to keep her off of the focalin so that she spends two quality days eating, but the carbatrol is so thoroughly changing her moods that I can no longer do that. Anyway, we'll now be seeing a nutritionist regularly to help us help her gain weight.

I also will be making lots of phone calls to the neurologist in the coming weeks and months to discuss the medications she's on, side effects, and seizures she's having. I'm not exaggerating when I say I'll probably talk to the neuro at least once a week.

I'm not really having trouble adjusting to this fact. We've done it before several times. It's mostly that I forgot how much it takes to keep her healthy when the seizures are with us.

As a side note, she had a seizure Friday. New countdown: 4 days with now seizure activity. Let's hope for many more.

Joey's Song

If you get a chance, stop by the Joey's Song website. It was set up in honor of Joseph Gomoll, who had Dravet's Syndrome.  He passed away on March 30, 2010, and the foundation raises money that goes towards the Epilepsy Foundation for research and also the early childhood program in Joey's hometown to provide education and services for children with special needs. 

Go take a look.  It is definitely a worthy cause.

Thanks!!

Special Meeting Yesterday

Yesterday I attended a special meeting at my daughter's school regarding the school's seizure action plan for her.  In October during her ARD (IEP meeting), the school's diagnostician, school nurse, and I developed her seizure action plan.  It was unique to her, including possible triggers, hints that there was going to be a seizure soon, and special first aid during the seizure.  In it, we decided that since she hadn't had a seizure in so long, that an ambulance should be summoned after two minutes of active seizing.  I wanted this part added to the plan because I couldn't honestly confirm that if she had a seizure, she would stop within a reasonable amount of time.  She has a history of experiencing status epilepticus, and I wanted to be sure that if she began to experience it again, medical intervention would be on the way.

Let me tell you about this meeting and about her school...WOW...just amazing.  You hear so many horror stories regarding schools and children with special needs.  I have a few of them from my daughter's first school.  This school has been nothing short of fabulous.  There were about fifteen to twenty individuals in the meeting, including the principal and vice principal, school nurses, music teachers, P.E. teachers, classroom teachers, and playground aids.  Every single one of them had familiarized themselves with my daughter's seizure action plan, and had questions for me.  I talked them through what seizure onset is like for her, and what last week's seizure was like.  I talked to them about the importance of timing the seizure, and talking to her throughout the seizure.  I walked them through basic first aid regarding seizures, and what to do especially for her.  We came up with really good ideas to ensure her safety while she was on campus, and by the time we left that meeting, every single person had came up with their own emergency plan for her in case they were the one to be helping her. (EX. who would evacuate the other kids, who would go for the nurse, where to keep her plan, how to tell substitute teachers, etc.)  We also decided that since she's had the first seizure since the med switch, that we could change the time from two minutes to five minutes in regards to summoning an ambulance.

I'm proud of everything we accomplished yesterday for her, but I think that I'm most proud of the fact that the seizure action plan went out to the entire school.  Many teachers were confused about why they had been given a seizure action plan for a student that they had never seen before, but the principal explained that there shouldn't be anyone in that school that doesn't know what to do when she has a seizure.  I'm taking that logic one step further, though.  I think that because they read through the seizure action plan, then they now have a basic idea about what to do if any child has a seizure while in their care.  We inadvertently reached about seventy-five people yesterday in regards to seizure safety and epilepsy awareness.  Isn't that amazing?

One of my goals is to have every school have a basic first aid staff development for their teachers about what to do if there is a medical emergency in the classroom.  It just doesn't have to be seizure first aid.  It could cover many, many things, but one of the medical situations covered would be seizures.  I work with teachers that still swear that the first thing you do when someone is experiencing a seizure is to put a spoon in the person's mouth so they can't swallow your tongue.  Seriously...you can't swallow your tongue.  It is physically impossible to do that.  If it wasn't, we all would have done it already. 

Another day without seizure activity...we're on day 4 of no seizures.  Hoping there's many, many more.

Weekend and Goals for the Week

Well, we made it through the weekend with no seizure activity, and things are looking up for my little one.  She rested most of the day on Saturday, and tortured our poor dogs yesterday, so I'm thinking that she feels much better.  I'm still concerned about another break-through seizure popping up, BUT I'm being cautiously optimistic.  Her new medicine is an extended release version of the Tegretol.  Her doctor believes that because it had been right at twelve hours since her last dosage of medication, and the Tegretol that she was on was the chewable tablets form, she had lowered medication levels in her blood.  So, he hopes that by changing her medication to the extended release version, she'll keep her medicine levels in a therapeutic range for longer.  I'm really, really praying that he is right on the money for this one.  At the very least, his thinking makes sense.

So, goals for the week...I only really have one.  I want her to stay out of the hospital this week.  She's been in the hospital once a week since before Christmas, and I feel like that is a tad bit excessive.  I mean, we recognized the resident that treated her at the ER, and he remembered us.  It is NOT cool to be on first name basis with the ER staff.

As a side note, I have a "What to do if..." meeting/ARD with her school this afternoon.  When she had her seizure last week, I immediately emailed her classroom teacher and went in to talk to the school nurse.  Over holiday break, the school hired a new nurse, and she seems like she's a pretty stellar individual.  When I went to speak with her, there wasn't any of the fear that the previous nurse seemed to hold.  Anyway, her classroom teacher forwarded my email to the school diagnostician, and because her school ROCKS, they're holding an emergency meeting this afternoon after school, AND her seizure action plan has been sent out to every faculty/staff member on campus.  This way there's no chance of her having a seizure, and the adult around her not knowing what to do.  I'm so stinking impressed by that school. 

Staring at the screen...

I've been staring at the screen for the last two hours, wondering how to start this blog....wondering how to put into words the anger, the fear, the trepidation I've been filled with since last night.


Last night, I had to call an ambulance because my daughter had her first tonic clonic seizure in three years.  It was short, lasting no longer than 7 minutes from start to finish.  It was unexpected.  I stupidly thought that because she hadn't had a seizure since the med change two weeks ago, we were smooth sailing.  Clearly I was mistaken.  We spent a few hours in the ER.  We did a med levels check, and some more blood work.  Everything came back normal.  We were sent home, and I spent the better part of my morning on the phone with the neurologist.  He's putting her on Carbatrol, which is just an extended release version of the medication that she's already on.  I've alerted her school, and they've already updated her seizure plan, and they're holding a special meeting on "what to do if...." on Monday afternoon. (I love that place.)

When it comes to what needs to be done after a seizure, I've done all that I can.  I called the right people.  Updated what needed to be updated.  Logged what needed to be logged.  I've been the responsible parent.

I feel gutted though.  My heart is breaking, and I am terrified.  There's a panic involved with being a parent and not being able to physically battle the thing that is hurting your child.  The feeling that fills you when you look at your child's face, and you recognize that she's having a seizure...its something that I can't describe.  I'm pretty good in an emergency, but I will admit that I lost my cool for about five seconds last night.  The thoughts and feelings were flying through me so quickly that I barely had time to register them.  I clearly remember starting to cry, and saying, "No, no, no...oh, please no..." But then I got it together.  The tears hadn't even had a chance to really form.  My baby needed me, and I had to get myself together.  By the time I had grabbed my phone and hit the emergency button, I had gotten it together, and I was calm.

The feeling for me after she has a seizure is one of embarking on a new journey, and knowing you're traveling through unkind territory.  It's a barren wasteland, and the points of hope and happiness are going to be few and far between.  There are going to be setbacks, and she's going to have more seizures.  There's going to be Video EEG's ran, and doctors' appointments.  There will be blood work, and med increases.  And in the end, we won't have any more answers than what we have right now.  She has epilepsy.  We don't know why.  End of story.  There's no light at the end of the tunnel here.  There's no hope for her being suddenly cured.  This is a lifelong condition, and what this seizure event has done is remind us of that.  Just when we began to hope for a normal life for her, we were reminded that she's always going to have this problem.  Always.

Well, it's started.

When my daughter was put in the hospital for the kidney stone, her neurologist felt that the stone was created a side effect from the Zonegran, so she was put on Tegretol.  I think I've expressed my concern about med switches, and what they usually mean for us.  They scare the crap out of me.  Seriously, I could probably take out a group of zombies, and not bat an eye, but med switches fill me with a fear that leaves my insides quaking.  I don't want her to have seizures.  Period.

There's another side of med switches, though.  Once she's been on a medication for a few days, I can usually sense some personality changes, and I feel like I'm being introduced to a whole new individual.  I have to get acquainted with this new little person.  Her appetite changes.  Her favorite foods change.  Her sleep cycles change.  Heck, even her favorite shows change.  Her temper is affected.  My sweet, easy going little girl is replaced by someone that has emotions that are scarily close to the surface.  She cries at the drop of the hat, and it is nearly impossible to calm her down once she has started.  I feel like a glass wall has been brought down between us, and I can't get to her.  I spend months breaking through the wall, all the time knowing that at any moment she could have a seizure, and it could start all over again. 

In other words, it's my daughter's world.  I'm just living in it. 

Today her teacher emailed me because my daughter is experiencing double vision.  My instincts are telling me that her dosage of this new medicine is too high, so we'll be either doing blood work or adjusting med levels.  If it's not a med issue, I can't even begin to guess as to what is going on with her. 

****I was right...we're adjusting med levels first.