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Luv'N Lambert Life

Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

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My Momma Heart Is Broken {Epilepsy Awareness}

March 20, 2018 by Dana

My Momma heart is broken.  
Just when I thought maybe, just maybe Laycie could stop taking medication, that her seizures were possibly controlled, that she’d been showing no signs of the Monster, that Monster comes and shows his ugly face again.  We were settled and content and hopeful.  We’d let our guard down.
That’s the thing with the Epilepsy Monster: he comes when you don’t expect it, when you get comfortable, when you let your guard down, when you start to feel safe again.  It was my hope that my baby girl would not be on seizure medications forever.  Every day, that hope goes a little farther away.
Laycie is almost 10.  She’s had seizures since she was 4 months – exactly to the day.  They have not been kind to her.  
Her first seizure was a tonic clonic.  She went through multiple testing in that first 3 days after it happened.  Everything normal.  She was placed on Keppra and we were sent home.  
2 weeks later, at 4 1/2 months old, she went Status Epilepticus.  She had a 13 hour, relentless seizure that I thought would never stop.  9 tonic clonics and over 20 petit mals: we lost count at some point during the day.  I honestly thought I would not be bringing my little girl home that day.
Since then, her life has been filled with doctors, and blood work, multiple medications, therapy and more.  We’ve are thankful for the most part that we’ve been able to establish some control but even that is not 100%.  There are no guarantees for anyone who has this disorder.
For the last year, things have been going well.  We’ve seen very little activity.  We’ve had no partial or full seizures.  We had hope that maybe this was over for her. 
Yesterday morning that all changed.  She came to sleep beside me early in the morning, as is our tradition and a short while later I woke up to a rhythmic thump of the bed.  And I knew immediately we were not done with this Monster.  He was back again to show me that my hope was useless.
Laycie, thankfully, did not feel the seizure.  It was a complex partial centralized in her lower half.  Her legs shook and it lasted less than a minute.  She slept through the entire event and woke up her normal, sweet self.
She suffered no complications from it.  She felt fine all day.  She played, ate and did everything normally.  I’m thankful since we never know how things will effect her.
This morning, she slept beside me again.  No seizures but she was extremely restless.  This tells me her body is fighting and she’s not getting the rest she needs.  She’s argumentative and challenging today.  She has no idea why but I do.  This is the other side of Epilepsy.
So now we wait, we hope and pray.  But I face the truth: she may never outgrow this.  It may never go away for her.  
This has been our life for many years.  I’m used to it.  It’s not new.  But the hope is dwindling every year that at some point she won’t have doctors appointments, and scheduled EEG’s each year, or blood work every visit, and there’ll be no more medications to keep this Monster in control.  
It was my hope that one day she’d get to live a normal life.  One day she’d not have to do these things.  One day, she’d be okay and we wouldn’t have to worry so much.
Today though, we still fight the battle.
Until next time…

Filed Under: 2018, Epilepsy, Epilepsy Awareness, epilepsy blogger, epilepsy monster, Laycie, Life with Epilepsy, living with epilepsy, medication

God’s Nudges {Epilepsy Awareness}

February 22, 2017 by Dana

Sometimes God alerts us to dangers that may be happening around us.  I’m always thankful for these little nudges that let me know when I need to pay extra attention.  Especially when these little instances have to do with my children.

Last night, I tucked my kids into bed.  I said their prayers with them and kissed them.  Then I went to take my bath as usual.  Shortly after, I began to relax, I heard Laycie cough.

It was an unusual thing, as once she’s out, she’s usually out for the night.  But last night, I just felt different and I knew I should check on her.  So I did.

She was asleep in her bed, snuggled in but something told me to wake her anyways.  When I did I found she had the paths of tears coming from both of her sweet eyes.  As she opened her eyes to look at me, I saw her eyes were red.

She had no idea why I was waking her.  She didn’t know she had coughed.  She didn’t realize she had been crying.  I asked was she okay and she responded but her answer didn’t make sense.  I’m not sure if she had been dreaming or if this incident was seizure related.

This is the life of Epilepsy.  Outwardly, you see a child who appears normal.  A child who plays with her siblings, sings, jumps, runs like normal.  But beneath the surface the normal child ends.

From my experience, I have no doubt this was seizure activity for Laycie.  Her emotions, her responses on waking, her movements all point to something being “off” for her.  It wasn’t a seizure itself but activity in the brain that can lead to a seizure if not recognized and paid attention to.

Sometimes we miss these small signs that the Monster is nearby.  We don’t always catch those little things before the big ones happen but they are important to learn and to recognize.  By catching her small responses, I am able to snuggle with her to calm her.  I am able to see to it that she rests a little more, sleeps in and takes a nap if she needs it the next day.

Sometimes just simply laying beside her and holding her can help her drift into a deep sleep that allows her tiny self to reset.  This simple reset can help keep her from having a major seizure and that’s always the goal.  If she’s restless, we can find a relaxing activity which for Laycie is usually just being held and shown love from Mommy.  I can also apply our essential oils, either our frankincense roll-on or our lavender, to relax her and help her drift into sleep again.  Just these simple things can help.

There have been so many nights that I have laid awake in the last 14 years as a seizure Mom simply listening to my children breath.  There have been so many days when I have watched my children like a hawk judging what for us is seizure activity and what isn’t as well as what’s different for this child versus their sibling.  Epilepsy manifests into each individual person differently so it’s important to learn these small points, as well as the larger triggers for yourself or your child.  Learning their personal quirks and triggers can help you to stop the onset of a major epileptic event for that individual.

And always pay attention to those little God nudges.  Don’t second guess His reasons to alert you.  Go seek out what it is He wishes to make known to you.  You simply never know when one of those nudges may save your life or that of someone else you love.

God bless,

Dana

Filed Under: 2017, Epilepsy, Epilepsy Awareness, epilepsy blogger, Epilepsy Mom, Life with Epilepsy, living with epilepsy, seizure life, seizure monster, seizures suck

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