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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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December Update {Epilepsy Awareness}

December 11, 2014 by Dana

It’s been a month since I posted on the blog.  I really was feeling burnt out and just needed a long break.  Plus I was sick with strep for two weeks and simply did not feel up to writing anything.

My life is ever chaotic but full.  There is always so much going on.  It’s never-ending but I’m thankful we have so many activities to keep us busy.

Jackson has therapy every Monday in Charleston right now but that should be ending soon.  It’s for his Parent – Child Interactive Therapy and it’s been amazing for us.  His therapist is so impressed with our family and how quickly we have achieved our goals.  It’s been great for me too because it’s assured me that I have this Momma thing down.  Parenting comes easy to me even when I feel like I’m barely keeping it together.  I always knew I was born to be a Momma.

Jackson also has therapy on Tuesday’s where we always have.  He’s my third child at NextStep.  They are amazing to work with.

Last week, Jack was fitted for braces and shoes for his feet as requested by his wonderful therapist.  The braces fit inside his shoes and help with his arch support.  They keep his ankles from twisting and help him balance better.  At least that is the hope.  If these don’t work, he will get ankle supports to help him gain strength in his legs and feet.  The goal is to prevent him from having similar issues as Emmalee has.

Laycie began back with her speech therapy last week as well.  She’s officially done with physical and occupational therapy.  Her speech is still challenging though so she will continue with that.  I really need to get her an appt to have her tongue tie checked and discuss surgery options for it.  I just dread having her suffer with having that done.

She has a neurology appt on Monday.  We will see how she is doing and if she has lost any more weight.  If so, she will be switching medications again which is always a challenge for her.  The doctor had some suggestions for us that we will discuss at this visit.  Not sure what they exactly are but I trust his opinion on the matter.

Winston and Emmalee are doing great as always.  At the neuro Monday, I will bring up Emma’s followup for her feet so we can see where we are on that.  I’m so past ready for the doctors to get rolling with a treatment plan.

So that is our most recent update.  Life is just so busy right now and Christmas time is always exceptionally busy for us.  Hope you are all well!  God bless!

Filed Under: 2014, busy life, challenges, enjoying life, Epilepsy Awareness, family, journeys, medical, mom to four kids, therapy

Homeschooling with God’s Blessing {Epilepsy Awareness}

August 7, 2013 by Dana

Nine years ago around this time, it was time to enroll my sweet baby boy, my oldest into public school.  I totally wasn’t feeling it.  It just seemed wrong to me to send my sweet and curious boy away to someone else all day.  So this lead me to research.

I immediately got online and began researching our schooling options.  I had come across Homeschooling somewhere on a parenting board.  It intrigued me and I wanted to know more.

We {my now ex-husband and I} had just went through a long ordeal of beginning our journey into Epilepsy with Emmalee.  She was still just a baby, around a year old and had been doing great on her medicine though she would have the occasional breakthrough as the dose grew weak during her growth spurts.  School would be coming up for her before long too, as time has a way of flying.  I knew I did not want her to go through the same things I had as a child in public school with Epilepsy.   I researched homeschooling even more.

I prayed.  I remember I actually got down on hands and knees for this one.  I continuously prayed.  I’d look at my children and say a prayer, “God just show me what to do”.  I’d be in a store and think, “what should I do about school for them?”

It didn’t take long for the answer to come.  One day, I was shopping in a thrift store and came across some How to Homeschool books.  I grabbed them up.  A few days later I was dropping off some unwanted items into the local swap building and discovered a stack of homeschooling curriculum someone had dropped off.  Since it was free swap, I grabbed it up too.

I came across our homeschooling association.  I put off calling.  After finding the items mentioned above, I decided to give them a call.  They were absolutely wonderful!  So caring and so helpful.

I went to the local library the association had suggested.  I spoke in person to the lady in charge of curriculum materials for homeschoolers.  She was a blessing to me!  God was providing just the people I needed.  She showed me so much that day and taught me lessons I still give to others today.

I attended the New to Homeschooling class from our local association.  It was an “Ahhh” moment.  I left there still nervous and scared but so much more prepared for this journey than I ever realized I could be.  God had  more than answered my prayer over that few months.  Homeschooling was exactly what we were going to do.

We started homeschooling Winston immediately.  Emmalee would join in later.  I was prepared for only one kid.  I had invested in a Bob Jones curriculum from the local Homeschool Used Book Store.  I was determined this was going to be done right and that meant Public School at home.  No one would say I’m not teaching my kid!

Boy, how little I knew then!  It immediately failed.  We struggled.  Win hated school.  And those lessons have stuck with him for life.

Win is my hardest student.  He excels at Math.  He loves going outside to learn science and is hands-on about history.  He hates and is not good at reading.  We have used almost every program imaginable and still he struggles.

Emma excels at reading and trust me, I often question how.  We have used so many varied programs that she really should be struggling with it herself.  With all the time I have spent focused on her brother’s reading, she has really taught herself what she wants to know about the subject.  Sure the curriculum was there and it helped but the learning was all her.

{I am honestly proud, not only of her but she has shown me that I’m not a failure as a teacher after all.}

Over the years, we’ve kept plugging along with homeschooling.  There was a brief period in the midst that I enrolled the oldest two in Public School at the insistence of others.  I immediately regretted that decision when Emma began having migraines and seizure activity after being seizure free for a year.

And it was in that period of time that Win’s esteem suffered because the school made him realize what he never had: he couldn’t read at age 8.  Many boys don’t read at that age but they never explained that to him.  I’ve spent many a day trying to rebuild that destroyed esteem and let him know it’s ok that he struggles with something and it’s not the end of the world.  He will get it and he is getting closer to where he should be each and every day.

I pulled the kids back out of public school.  Emma’s health recovered almost immediately when we returned to our normal routine and she was able to rest and not stress.  Win and I are still working on the issues he gained while at public school but we are getting there.

Now here we are, 9 years later.  Over time, I have questioned our reasons for homeschooling.  I wonder if it was the right decision but then there is always something that confirms it was God’s will to me.

Just today, I thought about it.  I realized there is no way I could even begin to raise and care for four kids with three that have Epilepsy if I wasn’t homeschooling.  The schools in our area are not equipped for them.  Then there would be the issue of keeping up with their public school lessons, missing days, taking time off for rest and doctors, etc.  The truancy officer would surely be knocking on my door every week!

God knew just what His plans were for me as a Momma of children with Epilepsy.  He planned ahead, allowing me to Homeschool.  He blessed me with great children who love and listen and help each other along with Momma when she needs it.  He prepared us with a way to bond unlike any other and a way to learn that brings us even closer together.

As you consider your own journey into homeschooling, with or without medical reason, remember to pray.  Remember to ask God for direction.  Sometimes He will point you to Public School because He needs disciples to light candles in the darkness there too.  Sometimes He will lead you into Homeschooling because He knows it is what’s best for you, as has been our case.  Either way, the results will always be to Glorify God in the lessons and in Life.

Filed Under: 2013, blessed, Epilepsy Awareness, gift, god's blessing, homeschool, homeschooling, medical, our journey, reason, struggling learner, Struggling reader

The Epilepsy Monster Strikes Again {Epilepsy Awareness}

June 12, 2013 by Dana

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.
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Filed Under: 2013, battle with Epilepsy, Children with Epilepsy, Epilepsy, Epilepsy Awareness, er, living with epilepsy, medical, normal life, seizures suck

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