Luv'N Lambert Life

Mental Health, Homeschooling, Epilepsy and More

Epilepsy

And So Jackson’s Journey Begins {Epilepsy Awareness}

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Everyone keeps asking me how I am today and at this very moment all I want to do is SCREAM.

Honestly, just scream and let it all out.

I have four beautiful, awesome, amazing children who I love to pieces.  I’m so thankful to have every one of them.  Thankful for the impact they make on my life.  Thankful to have the blessing of them to love and cherish daily.

Yesterday, I was the Momma of two children with Epilepsy.  In the blink of an eye, I became the Momma of three children with Epilepsy.  Three out of four of my babies carry a gene that has caused their brains to shut down in a convulsion.

I sit here letting that sink in.  I’m in shock.  I’m lost.  I don’t even know how to process that information at this time.

For 10 months, I’ve watched Jackson closely for any signs of seizure.  I began to breath a little easier as we passed the 4 month mark when his sisters began their journey with Epilepsy.  The older he became the easier I began to breath.

Last night, Jackson had his first seizure.  It happened around 8 pm while I was out of town.  He was with his Grandma.  She said she changed his diaper and suddenly he rolled to his side in a ball.  His tongue curled, his eyes rolled into the back of his head and his little body went limp as he stopped breathing and turned blue.  She said it only lasted a minute.  He was unresponsive afterwards, then came to again.  After a few minutes he went completely limp again.

I rushed to the hospital as fast as I could.  I was told that as soon as he was brought into the ER, he was rushed back and the nurse and staff all agreed it was a seizure without doubt.

When I arrived at the hospital, Jackson was crawling across the hospital bed like nothing had happened.  He had his right arm wrapped into a bandage with an IV but he was smiling and happy as if nothing had gone on.   He amazes me.  All my children do.

We were sent home with the diagnoses of a seizure and the advice to follow up with our Pediatrician and our Pediatric Neurology team which we have today.  His appointment with his Pediatrician was at 1:30 pm today and went wonderfully.  He weighs 17.2 lbs and is 29inches long.  They immediately called into MUSC Pediatric Neurology and we had a scheduled appointment before we left today.

So far, Jackson continues to do well, though he’s extremely sleepy today.  We are letting him play, eat and rest as he pleases.  The ER doctors and Pediatrician did not prescribe medications for him simply because they wish to leave that up to the neurologist to do.

I’m feeling numb in so many ways.  I want to scream and yet I feel so blessed to have been giving three children with this disorder to care for and love.  Does God really think I am capable of handling such a heavy task as this is?  He must because it’s here and there’s no one else to do it but their Momma.

I keep thinking that and I keeping thinking he must think me a Saint, a person of strength.  But I surely am not feeling that way even though my mustard seed of faith tells me that He is with me and He will carry me and my babies through this.  Weak and loved I am today and always. Weak and loved by God himself.

The Darkness That Lurks {Epilepsy Awareness}

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How do you do it?
How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won’t die?  How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?
My Momma heart breaks for her.  My Momma heart wants to scoop her up and hold her tight and keep her safe forever.
I want to SCREAM.  I want to SCREAM to God, “WHY?!  Why my daughter?  Why my precious baby?  Why does she have to suffer with this?  Why does anyone suffer?”
I can’t reassure her that she will wake up from the next seizure.  I can’t reassure her that there won’t be another one.  I can only tell her about Heaven and all the great things that await her there.  Even when I don’t want to because I pray deeply and hard that she will not know for a long, long time.
“Momma, who turned out the lights?”, she asked me. “Was it you?” “No, baby.”  “Was it Daddy?  Why would Daddy cut the lights out on me?” “Daddy didn’t, angel.”  “Oh, Grandma did it then!”
All this past week she has been terrified of the dark.  It didn’t take me long to figure out what she meant.  Her whole little safe world went dark last Tuesday morning.   She couldn’t see for almost an hour.  Her eyes dilated so much that she wasn’t able to see anything but a black abyss.
And it hits me: just how terrified she was.  That this seizure affected her sight so badly.  That the next one could honestly leave her blinded for good.  That I’m thankful this seizure didn’t leave her blinded for life.
It hits me that she could have died last Tuesday.  That she stopped breathing on me.  That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing.  It had completely taken control.
All I could do was watch and pray.  All I can do now is wait and pray.  I do daily and she has prayed too, wholeheartedly.  We all have.
Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old.  One week has passed.  Multiple conversations to make her forget and feel more at ease have happened.
Every day we have the same talk.  “Momma, it was dark.” “I”m so sorry, Laycie.”  “But you didn’t turn out the lights on me?” “No, baby.” “You will keep on a lamp for me.” “Always, if it makes you feel better.”
And I do.  She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again.  I leave the light on for her and for me.  It helps me see if she’s breathing.  It helps me see if she’s a little too still.  And it puts her little mind to ease.
I don’t know what the future holds.  I don’t know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute.  And pray, for her and with her every time she needs to do that and even when she isn’t even aware I am.
I’m thankful that God has blessed us with more time.  I’m well aware of the Mothers that weren’t given that chance.  My heart aches for them and for all the Momma’s who must watch their babies suffer so much.
For now she sleeps, though it’s still very much restless and we wait patiently to see if this monster is lurking or controlled for now.  Only time will tell.

The Epilepsy Monster Strikes Again {Epilepsy Awareness}

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Days at Luv’N Lambert Life appear fairly normal.  There is no general chaos or drama unless it’s caused by the outside world.  We go about our days, living and enjoying life with little issue.

But there is a hidden danger that lurks here every day.  It strikes when I least expect it.  It completely wipes my child out and hinders my days and weeks.
Epilepsy is our hidden danger.  You don’t see it physically in my children on a daily basis but it’s there, lurking, waiting to strike when I let my guard down and think everything is ok.
Yesterday morning it hit us again.
Monday night went as planned: dinner, kids baths, kids to bed, get things laid out for therapy on Tuesday.  It’s our routine.  We do it every week.  No problems.
The kids went to bed.  They were staying over at Grandma’s house.  Laycie, as always, slept snuggled next to Jackson and Grandma in Grandma’s bed.  All was well and everyone slept nicely.  I slept at our house, not 100 yards away.
Morning came and my phone buzzed heavily.  I honestly thought it was my alarm telling me to get up and get ready for therapy.  It wasn’t.  The phone said “Mom”.  My heart dropped as I answered it.  All she said was, “Get over here NOW!”  My mind raced to think “which one of my babies is hurt.  Oh God, please let everything be ok!”
I knew better.  I knew something was wrong.  I ran into the house and yelled to my Momma, “where are you, what’s wrong”.  I could hear her calling Laycie by name.  It was all like a terrible nightmare.
I walked into her room to see my baby, my tiny sweet precious girl laying with her legs straight down, arms pulled stiffly up to her body.  Her lips were grey, blue.  Foam was pouring out of her mouth.  Vomit mixed in.
She was seizing and there was nothing I could do.  I remember saying, “is she ok? Is she breathing?”  No, at that point she wasn’t.  Her heart was beating, her breathing had stopped and she was stuck in the midst of this seizure that we couldn’t stop.
Poor sweet Jackson was laid at the end of the bed just looking around.  He had no idea what was going on, as this is his first experience with his sister’s Epilepsy.  He looked from me, to sissy to Grandma and wondered why no one picked him up though he was smiling sweetly.
Laycie was our only concern at that moment.  I had left my phone at the house, so I grabbed my Mom’s.  Thank God it was charged.  I dialed 911.  A man answered.  I left the room, my baby with my Mother and ran to get my Mother-in-law, all while telling this kind man the details of our emergency.
On the way, I told Winston and Emmalee to get up.  I remember telling Emma, “your sister is sick, get Jax now”.  My sweet strong, Emmalee who went through all of this so many times herself is now on the other side, watching her sister suffer.  And my rock Winston who I could not have made it through without.
I remember telling the 911 dispatcher my address while running across the yard to my Mother-in-laws.  I remember telling him my number.  I remember telling him “my 5 year old is having a seizure, please God hurry” “she isn’t breathing, she’s blue, she’s foaming”.  I am quite sure he thought I had probably lost my mind by this point.
I remember standing in front of my Mother-in-laws door thinking “should I knock or just walk in”.  I knocked, then I reached for the handle.  “Is it locked, oh please don’t let it be locked”.  As I reached for the knob I could hear the dogs barking so I knew she’d be getting up to see what was wrong.  I called for her.
She was coming down the hall and asked “what’s wrong”.  I told her “Laycie is having a seizure.  I need you to come now”.  I turned around, left and ran back to my baby.  She followed.
I ran back into the house and updated the dispatcher on Laycie’s condition.  She was still seizing.  Her body jerking uncontrollably while my Mom talked to her, trying to console her.  She was still pale.  We rolled her back onto her side.  She was so still but she was breathing again.  I remember taking a breath at that point and thinking “thank you God, it’s almost over.  Please don’t let her go into a another one.”
The dispatcher was still on the phone.  At some point I ran to our drive to see if the first responder was arriving.  I remember him telling me the fire truck would come first.  At this point they weren’t there.
I ran back inside.  Laycie was still but not seizing.  I ran back out and the fire truck was pulling in.  The dispatcher hung up.  I waved the fireman over.  I told him she was inside.  I led him to her and let him work.  I could hear my Mother-in-law saying “the ambulance is here”.  I heard her telling me “you need to get dressed so you can ride with her to the hospital”.  I ran out, waved the ambulance to the back.  I ran to get dressed.  I grabbed my purse, my phone, threw on clothes, grabbed Laycie a dress and ran out the door.
By the time, I got back the EMT was carrying her to the ambulance and she was crying uncontrollably.  But it wasn’t a cry, it was a scared, rhythmic whine.  She wanted her Mommy but I couldn’t hold her.
I jumped onto the ambulance first.  Then the EMT lifted her in, along with herself.  She laid her on the gurney and buckled her on.  She handed her a huge stuffed bear, as big as my Laycie and she snuggled right into it.
I realized about the time we got down to the mailbox and I began to breath again knowing she would be ok for now, that I still had my Mother’s phone.  Everything had happened so fast that I had forgotten to hand it back to her.
When we arrived at the ER, Laycie’s eyes were still dilated and she was still doing her rhythmic whining.  They lifted her into a bed.  It wasn’t long before the ER doctor came in.  He asked all the usual questions.  I told him I simply had her brought in to be monitored.  He asked “what kind of monitoring are you expecting?”  My honest emotion to that question was “what the hell?!”  I replied, “I want her vitals checked and I want her here in case she seizes again to be sure her seizures are controlled”.
Laycie’s seizure was a Grand Mal.  It lasted approximately 4-5 minutes.  She was postical for 3 hours.  She was completely unresponsive when the first responder arrived.  My Mother said he insisted the EMT’s carry her in.  Other than us, he saw the most of the results of her seizure.

It took Laycie 30 minutes to become responsive, other than the rhythmic whine she had in the ambulance.  Her first response was to shake her head.  It was barely visible and she would only tell me yes to simple questions that I asked of her.
It was another 30 minutes before she would speak to me.  She couldn’t see me because her eyes were so dilated and out of focus.  She couldn’t speak because her seizure had locked that part of her brain at the time.  She couldn’t take her medicine because she couldn’t open her mouth.  She wasn’t able to control that part of her body.
She didn’t talk until her Daddy came in about an hour after arriving at the hospital.  She was so happy to see him.  She lit up the room with the expression on her face.  He climbed in the bed with her and she snuggled right into him.  It was then she started talking.
She was quiet and slow but she was coming back to herself.  We were finally able to give her her meds which she took with applesauce, though she wanted her usual yogurt.
She wanted to eat so her nurse brought her juice and crackers and found her a sausage and cheese biscuit.  Laycie ate the sausage and picked at the rest.  Her tiny body was so tired though she was trying to gain control of it again.
After eating she snuggled up to her bear the EMT’s had given her and took a nap.  It only lasted about 15 minutes but when she woke back up she was back to herself again.  She wanted to get off the bed.  She wanted to go home.  She kept trying to pull her wires off and put them back on.  She was ready to be Dr. McLaycie, as we often call her at home.
Her least favorite part, even though she tried to prepare herself, was having bloodwork done.  She did so well though.  She tried not to cry but when the needle went in she lost it.  Poor, sweet angel.
It wasn’t long after that we were able to go home.  She’d had no seizure activity in the ER.  Her vitals were all good and strong.  The ER doctor called her med team at MUSC, who advised them to tell us to increase her morning dosage on her meds and to call and schedule her next appointment to be seen.  So that is what we are currently doing.
We came home and we’ve been relaxing together ever since.  She’s laid in Mommy and Daddy’s bed and watched tv.  She’s eaten well and has a strong appetite.  The med increase is making her excessively thirsty.
I’ve tried to encourage her to sleep but she’s scared.  I asked her why and she told me a Monster tried to take her over.  I can only assume she means her seizure.  I’ve held her and talked to her until she felt safe enough to sleep.
I’ve personally struggled to go to sleep.  I’m terrified of her having another seizure and being alone in it.  Or worse, not waking up from it.  I worry that I will wake up to find my baby not breathing.  It is a living nightmare.  A horror movie come to life.
Every twitch she makes, I wake up and check to see if she’s ok.  I refuse to disturb her other than checking to see if she’s having a seizure and I won’t leave her side for long.  When I do, someone is with her: Grandma, her brother, sister or Daddy.
Right now I’m in watch overdrive.  She on the other hand, appears to be back to normal.  She feels great, she says.  The only set back is her fear of sleep and the thirst from the meds.  I wish I could feel as at ease as she does.
She now carries her big white bear with her everywhere.  We’ve named him Mr. Snuggles.  In one day, they’ve been through a lot together.  I imagine they will go through a lot more.
I’m sharing our story so that others have an idea of what a family and a child with Epilepsy goes through.  Everyday people see my child and think “there is nothing wrong with her”.  I only wish that was so.  You can not see her disorder.  It attacks when we least expect it, when we let our guard down and begin to think it’s ok.  But it’s there.  It’s a daily part of our lives and we are always looking, waiting, preparing for it’s attack.
Other Momma’s who do this daily understand.  But not everyone gets the picture.  My hope is that our story, our blog, our life helps give you a better understanding of what Epilepsy really is.  And my prayer is that you never have to experience it first hand.  SEIZURES SUCK!
God bless.
<3 dana="" p="">

Blown Away {Epilepsy Awareness}

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I’m sitting here tonight, blown away.  Earlier tonight another sweet angel was called to Heaven.  This sweet boy had Epilepsy.  He was only a year older than my sweet baby Laycie.

6 years old seems like such a short life.  Laycie is 5.  I cannot understand how a child can suffer such a thing and have brought God Glory in such a short time.  Things are not for me to understand.

I pray daily for children, like my babies, who suffer from Epilepsy, among other things.  I have so many people that I love who’s beautiful babies have this dreadful disorder.  And I wonder why must our children suffer from this?

Another friend told about her day as an Epilepsy Mom.  She was confronted by a woman who told her that her precious son has Epilepsy because of her choice to have tattoos.  It was God’s way of punishing her.  I say if that’s God’s way for doing something so simple then I guess everyone would be punished.  And if Satan has a hand in it then that should be a simple fix!

Unless you have a child with Epilepsy or some similar debilitating disorder, you cannot understand what it’s like as a Mother to deal with insolence and stupidity when it comes to others who don’t understand.  Stereotypes and stigmas surround Epilepsy.  People truly believe that demons possess those of us who have Epilepsy.  People think holding an exorcism will simply take them away.  But that’s not how it works.

This disorder is VERY REAL.  It’s real for all of us who daily watch our babies struggle to hold on for life.  And it’s real for those of us who have to watch our children slip away, who have to say goodbye way too early to those precious beings that we love so much.

I cannot imagine what it is to lose a child.  I pray to never have to know.  But the reality is that my own baby could leave me just the way this sweet boy left the world today: in a coma induced from her seizures, never again waking to tell me “I love you, Mommy” or “sleep with me Mommy” or “I need some Mommy time”.

Tomorrow, I will make it a point to go to her therapy with her, to hold my baby boy, to kiss my eldest head and to hug my sweet artist a little tighter.  Tomorrow I will make it a point to be there in the moment and be thankful for the blessings I do have because they aren’t promised but they are a gift to be appreciated.  Never take them for granted and keep the family of the sweet boy who passed today in your thoughts and prayers.

God bless <3 p="">

Harrowing Day: Accidents Can Happen To Anyone {Epilepsy Awareness}

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Some days just get you.  Break you down from morning to night.  Bring trials you cannot image when you begin them.  Today was one of those for me.

Last night, Laycie decided she needed to sleep with Mommy.  She does that sometimes.  Sometimes it’s just because she needs the extra snuggle.  Other times it’s because she just feels off, which is common for her seizure type.  So, of course, I let her.

Last night, she wasn’t feeling well so she wanted to sleep with us, and sure enough she began running a fever in the night.  She’s been battling a canker sore the past few days.  We were hoping it would get better but it worsened, leading to her fever.

Having a child with Epilepsy, fevers tend to not be friendly things.  They can lead to a convulsion.  They wear a normal child out but even more so with an Epileptic child.  Needless to say this morning we were not up to going to therapy and we spent much of the day on the couch.

Since she wasn’t feeling well and had a fever, I pushed liquids to keep her hydrated and Motrin to keep her fever down and help her rest.  This afternoon I offered her a butterscotch, thinking it would help sooth her throat.

She enjoyed her candy for a few minutes, then suddenly the hard candy slipped into her throat.  She began to gasp for air and clutch at her throat.  She began crying and trying to cough.  My baby was choking on her piece of candy.

I quickly grabbed her up and sent her sister to find my Mom who had gone next door to her house.  Laycie was still gasping and struggling to breath.  Her body was automatically trying to throw her candy back up to get it dislodged.

My Mom, who is CPR certified, helped Laycie while I grabbed my Tahoe key and purse and ran out my door, only to run back in and grab Jackson.  By this point Laycie was ok and breathing again but crying still and telling me she still felt like the candy was stuck and I definitely wanted to have her checked at the ER.  A normal 10 minute drive to town, only took 5 minutes or less today.

When we got to the ER they took her straight in and I was assured by the closest EMT that since she was breathing and somewhat talking to me, she was fine.  Still I had the doctor look her over, check her since she had a fever all day and had the canker sore.  He told us the sore was causing her fever and it would just have to run it’s course.  And he assured me though her throat would probably be sore she was fine.

Laycie has assured me she does not want any more butterscotch after her experience today.  She is doing much better now and is soundly sleeping in my bed again tonight, not because she wants to but because Momma needs her close after such a harrowing day.

Hug your babies.  Keep them close.  We are never promised tomorrow and we never know how close we are to going “home”.  I am thankful to God that my baby girl is just fine and snuggling with her Momma tonight.

This Momma is shutting down for the night but I hope you all have a blessed Wednesday.

Weak and Loved for Epilepsy Guest Post {Epilepsy Awareness}

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*This is our most popular post at Luv’N Lambert Life and I’m so very thankful for everyone who has stopped over to visit us, as well as followed to read our story.  We are blessed by each of you.*

Today is the release of my first guest blog post ever! Emily from Weak and Loved asked me to stop by and share our story of our life with Epilepsy for Epilepsy Awareness Month. I’m so excited. I hope you will stop over and check out our post to learn more about us and help spread the word for Epilepsy Awareness Month. You can read the post here on Weak and Loved! 

 ~ Dana
I spread Awareness for Epilepsy for my daughters,
Emmalee and Laycie,
who both began Life with this disorder as infants.

Always praying for a cure!
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