epilepsy

Insights from Harry Potter in the ICU

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Zoe in ICUHello,

If you’ve been reading my blog for a while you will know I have taken a break from blogging.  My oldest daughter has epilepsy and on October 29th my daughter Zoe had brain surgery to place a grid onto her brain to locate the foci of her seizures.  On November 5th, she had her second brain surgery to remove a small part of her temporal lobe as well as a portion of her hippocampus in an effort to stop her from having seizures.  Preparing for this surgery was intense.  Getting through her hospital stay, watching her cry in pain, holding her hand through countless IVs, and crying hysterically in waiting rooms while my sweet girl underwent two brain surgeries is almost too much to bear.  However, in this entire process something remarkable happened, I realized my daughter is simply put – amazing.  She inspires me to be a better mom and a better person.  She handles things most adults couldn’t with grace and bravery.

While she was in the hospital I had planned to read to her from the new illustrated version of Harry Potter and the Sorcerer’s Stone.  I was so excited to think that my sweet girl, might just get into Harry Potter and we could enjoy it together.  After her second brain surgery I decided it was time, she was asleep from over 5 hours of surgery and anesthesia, but it was worth a shot.  Once I stopped weeping and was able to clearly see the reading began, then quickly I began to weep again.  There is this remarkable part, which I had forgotten about reading this story all those years ago.  It is in the first chapter when Dumbledore, Professor McGonagall and Hagrid are standing outside of the Dursley’s house on Privet Drive, when Professor McGonagall ask about infant Harry’s scar and if there is something that Dumbledore could do about it.  His response is simple; “Even if I could.  I wouldn’t.  Scars can come in useful.” (Harry Potter Sorcerer’s Stone, J.K. Rowling, 1998).  You see my exceptional little girl now has what my husband and I call one “badass scar”, this scar is going to be her badge of courage, sign of bravery, I was tougher than epilepsy, a marker that she is indeed – Zoe the Brave.  Although this scar will someday soon be covered by her lovely curled locks, it will always be there, I hope as a reminder of her strength and bravery.

Erin

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Friday Five and a Personal Note

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Hello all, this is a little bit more of a personal post than I normally do.  I usually mention my girls, but don’t give away too many details about their little lives.  However, this week, I am going to share about my oldest and some big stuff that is coming up.  So here are the five reasons I am making it through this week without losing my mind.

 Five Reasons I am Making it Through this week

  1.  My husband is literally the most amazing person I know, he keeps me laughing as well as sane
  2.  My girls bring insane amounts of joy and love into my life
  3.  I have an amazing support system in my friends and family
  4.  I try really hard to make lists, even if sometimes I add things I’ve already done, just so I can cross them off
  5.  Not going to sugar coat this one, caffeine, lots of caffeine

Alright here goes…I have shared in the past that my 5 year old has epilepsy.  She was diagnosed when she was 4 years old.  She has had many different tests and one hospital stay in the past year.   She has been on a few different meds and we found one that was working, in fact so much so that we hadn’t seen a single seizure in 8 months.  However, that all changed as we were boarding a plane to Disneyland in December and she had a seizure.  Her seizures, started happening again on a more regular basis and started to really impact her.

Having a petite that has a medical condition like epilepsy can be completely devastating, and maybe not for the reasons you might think.  Of course, the obvious, it isn’t fair, but because sometimes it can rob her of experiences or change her experiences and that is a tough pill to swallow.  Sometimes it is hard, because you want to keep your petites safe and you can’t, you can only do your best, and sometimes that isn’t good enough.  Other times, it is that you see everyone else with their perfectly healthy children and you get a little jealous.  But, that’s not helpful.  Sometimes it is the guilt you feel that somehow you caused it, maybe it was the coffee you drank or the stress when you were pregnant or just faulty genetics – again not helpful.  At times it is when people say I don’t know how you do it, or when I have a bad day I just think about you and I feel better, not realizing that what they are really saying is you’re my it could be worse person.  Sometimes it is just that you feel helpless. Sometimes, the hardest times, are when the worrying and fears of it all get to you and you feel like crying.

With all that said, there are some things that I have learned over the past year.  As parent’s we do the best we can.  My husband is my strongest support and I am lucky to be in the foxhole with him.  We fight and advocate and rally around our petites fiercely.  We sometimes need to vent and finding someone who will listen and not try to solve the problem is invaluable.  Having a support system is critical, whether it’s a group on a Facebook page or a circle of friends.  Sometimes it is just trying to let it go and know that tomorrow will be another day that you made it through this one.  The most important thing that I have learned through all of this is that my daughter is an amazing little girl, who is incredibly brave, compassionate, empathetic and smart; that epilepsy is something she has, but is not who she is.

Our petite is going into the hospital for a seven night admission.  I am trying desperately to get everything organized and ready so that it is as smooth as possible.  I will write more about the planning for such a long hospital stay soon.

My Petite and Epilepsy – Diagnosis

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I’ve mentioned in previous posts that my petite has epilepsy, but I’ve never gone into too much detail about it.  Part of the reason is that the more I talk about it the more it becomes real and part of me is still possibly in a sense of denial.  You see I want to wrap her in my arms, much like I swaddled her as a baby and hold her close, close so I can protect her and keep her safe.  Recently, I admitted out loud that maybe I am not okay. I’ve been trying to put on a brave face and advocate fiercely for my girl.

How in a single moment everything changed:

In October my girlie was home from school and taking a nap, she woke up and seemed a little bit out of it, she seemed like she was still really tired.  She came down the stairs and just stood there, when I called her name she didn’t respond, her eyes were not focused.  In the amount of time it took me to get to her from where I was sitting, the “episode” was over.  She was back to her normal self.  I assumed she was just tired, maybe had low blood sugar or needed a snack.

The next day she woke from her nap and came downstairs and tried to talk to me and couldn’t.  She stuttered out mommy and was unable to focus her eyes and fidgeted with her dresses hem, her lips started smacking like she was chewing something that wasn’t there.  She stood, just looking off into, well into nothing.  Her father and I were panicked, we had never seen her doing anything like that before.  We immediately called the pediatrician and were seen two hours later.  We described what we had just seen and he checked her out and said she seemed fine now, but that it sounded like something neurological had taken place.  We left with a referral to a pediatric neurologist the following week.

The neurologist told us she wanted to get an EEG before she saw us in her office.  So we scheduled that.  In the meantime we started taking videos of the behavior that we were seeing if we could capture it.  We caught two seizures on video in less than one weeks time, both of them over 3 minutes long.  We showed up to the EEG appointment, the petite was nervous, as were we.  She was very confused because she had no memories of the seizures and in her mind only sick people go to the doctor and she wasn’t sick.  We started the EEG and almost instantly the tech held up a note asking when we were to see the doc.  We had no set apt, which we told him.  Unbeknownst to us, the tech had paged the neurologist with a 911 and she came down immediately to watch the EGG as it was happening.  Apparently, her EEG showed a multitude of disturbances.  My husband had stepped out of the EGG room with the baby since she was starting to fuss (we had our other daughter with us who was only 12 weeks old).  He had no idea the neurologist was out in the hall watching the EGG live.  She matter-of-factly told my husband that our girl had epilepsy.  I was laying in bed with the petite as she slept during the EEG trying to hold back the tears.  Later after she woke, I walked out to see what was going on with the baby.  When I walked out, my husband held my hand and told me that she has epilepsy.  I sobbed.  Before I even had time to process what epilepsy might mean the doctor was telling us about the medicine that she would be taking and what to do if the seizures turned into grand mal.

Epilepsy is a very scary word.  It is a very scary diagnosis.  It can mean so many different things depending on what type of seizures and the occurrences.  Of course when you hear that your four-year old has something that could impact her in ways unknown it is terrifying.  My heart ached.  There are moments now, where I can barely breathe when I think about my sweet girl and what all this means.  At the time, I had no way of knowing what was to come in the months in weeks ahead.  Even as I write this I have no way of knowing what is to come in the weeks or months to come.  What I do know is that I have an amazing daughter who is incredibly brave, smart, empathetic and hilarious,  Yeah epilepsy is something she has, something that is still scary, but it doesn’t define who she is.

Bravest Petite I Know

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As part of my petites ongoing testing to get her medications sorted out and the seizures to stop she has to have the occasional blood draw.  Since she is four it is pretty hard for her to really understand this process fully especially since she isn’t aware that she has epilepsy.  She is aware that she doesn’t feel well all the time, but not the specifics.  Well, she had to have a blood draw and when I picked her up from her preschool I told her we were going to go to the doctor and that she would be getting a shot.  She burst into tears and yelled that she didn’t want to get a pokey poke.  That it would hurt and that she was scared.  All while this is happening I usually forget, until later, how incredibly lucky I am that she can articulate all of her feelings about this even if sometimes it’s done by yelling on the side of the street. Once we got to the hospital she told me she was scared and didn’t want to go.  We talked about being brave and what that means…that sometimes we have to do things even when they are scary and we aren’t feeling brave.  My petite took a deep breath and said she was starting to feel braver.  When it was her turn they called her name and she got right up and walked to the nurse and introduced herself.  She saw the sticker basket and chose her two stickers and put them on the counter saying that they were for when she was done.  She hopped into the chair and held out her arm.  The nurse showed her the tourniquet and how it made her veins come out and the petite felt her veins.  This is when she started to get a little nervous…she took a deep breath and watched the nurse draw her blood.  She didn’t even cry.  When she was done she hopped down and thanked the nurse for taking her blood grabbed her stickers and walked out. photo Sometimes I forget she is only four years old.  I forget how articulate she is and can tell you how she feels even when she is really mad and really frustrated.  But she is still four, she is still in so many ways my baby girl.  It is in moments like this that I am astounded by how brave she is.  How polite she is to thank the woman who just drew her blood.  She is so much braver than I was.  In fact, there is a story about when I was 8 years old and getting some teeth pulled and I was terrified.  I got to the oral surgeons office and said I needed to go to the bathroom and promptly barricaded myself in the bathroom.  I think it must have been that smell, you know the dentist smell I’m talking about?  There was no amount of talking that was going to get me out, no bribery to be had, and no demands to be met.  I was content to live the remainder of my days in a bathroom at the oral surgeons.  Unfortunately for me, they had a schedule to keep and a key. I don’t know if bravery skipped a generation, but my petite is the bravest girl I know.