Luv'N Lambert Life

Mental Health, Homeschooling, Epilepsy and More

Children

Life is a Blessing, No Matter the Challenges {Epilepsy Awareness}

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Our life and our days revolve around our life with Epilepsy.  As a child growing up with this disorder, I was never concerned because my Mother protected me.  As a parent raising children who have Epilepsy, I am constantly concerned for the health of my beautiful children.

It’s not easy being on either side of this disorder: both as a person with Epilepsy or a parent with Epilepsy.  I’m thankful that I have mostly outgrown the effects of this disorder, that my oldest son, who I often forget to mention, doesn’t have Epilepsy, and that my oldest daughter has also outgrown her seizures for the most part.  That doesn’t make this life any less challenging to live.

I often find a hard time focusing on the day to day because I’m so overly consumed with waiting on the next seizure.  I often forget things because my brain is always on Epilepsy overdrive.  My constant worry is that one of my three children will have a seizure that day and that they may not come back out of it.  Even though Emma has outgrown her seizures, they could come back at any time with any traumatic event.

This is our life and most days it’s hard for me to talk about in person, so I come here to blog it — I can share, get my thoughts and feelings out without having to be face to face with someone to do that.  I am able to talk, really talk and express myself, our ups, downs and fears through our blog.  It’s been a real blessing to be able to share our life with others, to show them a small peak into our world and say “Hey, this is where we are, what we are doing and how it’s all going for us”.

Life is a gift no matter how challenging.  It’s a gift that cannot be replaced and is so short to live.  We must live that life to the absolute fullest and never miss a minute, even while given challenges like living with Epilepsy.

I have to say if my Mom taught me anything while raising me throughout my life as a child with Epilepsy, it is to embrace my life, to allow my children to live their lives to their fullest potential and to let no one hold us back from that.  And I do that for my children every single day.  I’m thankful for the gift they are in my life and even for this dreadful disorder which fills our days and keeps them busy.  I’m thankful for each minute, each second with each of my children as they are also thankful for those seconds with their Mother every day.  Life is the real blessing to live.

Rufus and Ryan Go to Church! {Propeller Review}

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By: Kathleen Long Bostrom
CandyCane Press
$7.99
Have you been looking for a cute way to teach your child about church etiquette?  Perhaps you know a child who hasn’t been to church and needs a guided lesson before attending.  Or maybe you know a child that enjoys sharing about church with others.
In Rufus and Ryan Go to Church! children learn about the process of attending a church service from beginning to end.  Ryan, a cute little boy with brown hair, LOVES to attend church service.  Rufus is Ryan’s favorite stuffed Monkey, only to Ryan, Rufus is so much more!  Ryan cannot wait to share Church with Rufus as he takes him along for the day.
Ryan and Rufus sing, read the bible, and pray together.  They also share in snack time, one of Ryan’s favorite parts of Church.  Ryan even shares a cookie with Rufus!  At the end of the day, Ryan can hardly wait for next Sunday when he gets to do it all over again!
This adorable book is written to help prepare children for Church service.  It would make a great gift for parents who have just adopted a child, grandparents who are taking their grandchildren to church for the first time, and children that love to carry their stuff loved ones, just like Ryan!
I really enjoyed this book and sharing it with my children.  My older children are a little too old for the book but my sweet 5 year old is just the right age.  She loved seeing Rufus and watching and listening as Ryan shared his day with Rufus and with us!
Rufus and Ryan Go to Church! is available from Ideals Books for $7.99 and is well worth the price!  It is a board book, perfect for those little hands with sturdy pages to use as a carry along.  The illustrations are colorful and cute, sure to keep little ones entertained as you read.
*Disclaimer – I received a free copy of Rufus and Ryan Go to Church! from Ideals Books and Flyby Promotions, as well as a free copy to giveaway on my blog in exchange for my honest opinion shared within this blog post.  I am including this disclaimer in accordance with FTC regulations and guidelines.

God’s Paths {Homeschooling}

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Have you ever thought about how the things in your past affect your day to day now?  As a little girl, I remember playing like most children.  I would play dolls and I would teach them.  I also loved to sing.

As an adult, I often think back to those childhood days and how those times of play have truly prepared me for my future, for today.  As a child, I never imagined that I would be teaching my children at home.  I always thought my career would be in education and that I’d also be singing somewhere outside of my home and church.

I remember sitting down with my dolls and with my imaginary pals, pretending I had an entire classroom in front of me.  I remember passing out pencils and worksheets, having those students complete tests and reviews of schoolwork.  I remember holding music classes with those students, singing and teaching those dolls to sing, too.

Now I have real students in my children and I know that all of my play was provided by God to prepare me for His will.  I am equipped by the Lord for this job that He’s provided me.  This is God’s plan come to life.

As a parent, I always allow my children plenty of time to play and use their imagination.  I do not direct their playtime.  I know from my own experiences that the things they learn and the actions they take during their play is God’s way of preparing them for a future that I cannot personally understand.  One day they will each do great things but these things will be as God has chosen for them in order to glorify Him.  Only He can lead them on this path that He wishes for them to follow, just as He has done for me before them.

What ways has God prepared you for your own journey in life?  What ways does He prepare your children?

A New Doctor {Epilepsy Awareness}

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The long awaited diagnoses is in: Jackson has seizures.  In our world, we call it Epilepsy as seizures are Epilepsy and vice versa.  He does NOT have Apnea as the neurologist first suggested.

Wednesday, both Jackson and Laycie went to the doctor for a double appointment.  We will have a lot of those in the future.  Hope they are ready for us!

Laycie’s checkup went first.  He stated she looked great.  He was as concerned with me over her seizure breakthroughs.  He said that he felt that she was being under-treated for her Epilepsy.  He felt she was not on a high enough dosage for control with all the activity going on in her brain.  Apparently, she has a VERY active brain which is no surprise to me!

All joking aside, Laycie’s brain has seizures in the that center around the Rolandic region with what are termed centrotemporal spikes.  The activity in this area is heavy but it is not the only area that shows activity for her.  He confirmed my suspicions that there may be more to it than the simple diagnoses of Rolandic Epilepsy and he is planning to look into the details of that for us.

His choice for now is to raise Laycie’s medicine dosage to 3 pills of Depakote at night and 2 in the morning to see if the breakthroughs become controlled.  If she continues to breakthrough or she has any of the signs of side-effects that we had previously when her dose was too high, then we will discuss the next step which will be switching meds.  His goal however, is to get her to 3 pills morning and 3 pills nightly at this time.

Once he finished up with Laycie and after much discussion of our strange generational family curse with Epilepsy, he moved onto Jackson.  Jax got the same rave reviews of being perfect, as Laycie had gotten.  He was a little concerned with Jax’s minor delays and is interested to see what happens with those as we start on medicines.

He asked that we give Jackson more time to develop his Epilepsy, allowing him to have another seizure before starting him on medications but due to him losing his breath and requiring CPR through his last seizure I was not willing to agree with him.  No argument, he completely understood.  So he sent us home with a script for Jackson for Trileptal.  We are starting off very slow and building up so that hopefully (fingers crossed) Jackson won’t have the same side-effect issues as Laycie had on the medicine.  He is aware of those effects and is willing to switch Jackson at any sign of them rearing their ugly head!

We left the office with a new neuro that I feel confident in.  He was great with both of the kids, made Laycie smile and happily answered all the questions I had, as well as held intriguing discussions on other issues dealing with the Epilepsy.  He learned from us and we learned from him.

We came home, filled prescriptions and immediately began treatments for both kids.  Laycie is awed at the size of her new medication bottle!  It’s super tall!  So far she’s doing great with the increase.  She was a little bit whiny today but it takes about a week for the tiredness and crankiness of the adjustment to stop.  I forsee naps for us in the next few days.

Jackson began his meds last night and is doing great with them so far.  He’s a little more tired than normal but acts like he can’t go to sleep at naptime.  He’s showing no signs of forgetting anything he knows or stopping speech which were issues Laycie had while taking Trileptal.  Since starting his seizures, he’s not been sleeping as well so I’m really hoping the medicine does help with that, so long as he doesn’t have delays from it.

We do have to keep a close eye on them both right now and we are doing that by splitting tasks.  Momma is sleeping near to Jackson and caring for him, while I am sleeping next to and caring for Laycie.  We split help from Winston and Emmalee and Josh when he’s home.  I’m so thankful to have children who are understanding, caring and so helpful with their siblings as mine are!  I cannot express how blessed I am by every single one of my children.

We are thrilled with the new doctor, the new changes and the new outlook on this disorder we are forced to live with.  Everyone is doing well for now and hopefully I can catch a break to rest a little while.  I am one exhausted Momma.

Weak but Blessed in the Normalcy {Epilepsy Awareness}

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Everyone keeps telling me how strong I am.  But I don’t feel strong.  I feel weak and tired.  I feel overwhelmed and unsure.  I have no idea how to manage my life as it currently stands.

I’m well aware it will all fall into place.  This isn’t my first time dealing with diagnoses and doubts.  I have two daughters with Epilepsy and now it’s possible that my son has it too.  I know from my life with my daughters that this is only a season and before long it will be routine and balanced again, as much as it can be when you live daily with Epilepsy.

This is normal for us.  The ups and downs.  The shifts and swings in life.  It’s our daily normal.

My girls have never had a “normal” life.  All they’ve known is Epilepsy.  Winston, my oldest, briefly had normalcy.  I cherish those days and I miss them greatly.  I realize now I had hoped for the same with Jackson because surely my boys wouldn’t inherit this dreadful monster.  I mourn the loss of that “normalcy”.

I remember being naive when Laycie was born.  I remember thinking “ok I have my daughter with “E”.  Laycie can’t have it too.”  I remember enjoying those days with her thinking this monster would never rear it’s god-awful head.  But then it did and here we are fighting daily.

I guess I thought the same with Jackson, though I wasn’t quite as naive this time.  I have watched for it in him for months.  As we passed the four month mark, I breathed a little easier.  I let my guard down, even when I knew better.

When I got the call the other night, I just remember thinking “my heart knew it was coming” and “not my baby too”.  But my instincts, my Momma heart, my sixth sense have all screamed at me to “be aware” for months.

Yesterday was Jackson’s neurology appointment.  The doctor went through the usual questions.  We answered them as best we could.  He wonders if there is a possibility of Apnea.  I tell him, “I don’t know”.

He asks me, “what would you like to do?”  Well, doc, I’d like to run like hell and hide my baby.  I’d like to have my baby back, normal and pretend this never happened.  I’d love to pretend it’s all a dream or there is another cause.  Previous history, strong family roots, gut instinct all tell me differently.

This nightmare will not just “go away”.  Its here and it’s big as night and day.  I chose to hold off on medicating Jackson.  I chose to agree to have an EKG for him to check for Apnea and an EEG to check for seizure activity.  I do not want medicines to prevent that possible activity from showing up, even though we know it may not anyways.  It doesn’t always show for me or my girls when have had EEG testing in the past.  I do want the chance to find out.

I’m at war with praying right now.  I pray he never has another seizure episode and at the same time, I pray it would just happen and get it over with.  Then I’d know what’s wrong with my baby and I wouldn’t sit in fear of him stopping breathing never to regain consciousness again.  I’d know.  We’d be able to treat him.  And life would move forward as “normal” as we could get.

Jackson is back to normal for him.  He’s smiling and cute as a button.  He’s trying to crawl, learning new words every day and working hard with his sign language.  It’s as if nothing ever happened which makes me feel even more like it was a dream even though I know it wasn’t.

I feel so weak and tired from all of this and I know that’s ok!  I don’t have to be strong but I have to get through it.  My strength comes from God, from Life, from my children.  I see them daily and know I must face the days ahead for them, even when I want to hide from it all.  Hiding won’t get a diagnoses or treatment for my son.

This is life.  This is the raw emotion of a Momma who is fighting every day to provide a normal life for her children who didn’t ask to battle a disorder called Epilepsy that generations have carried and passed on.  This is our daily life and our “normal” and I chose to be blessed by it even when I’m at my weakest.

Baker Publishing Group: The Adventures of Lily Lapp Series {Crew Review}

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From Baker Publishing Group, written by Mary Ann Kinsinger and Suzanne Woods Fisher comes the story of a kind and mischevious Amish girl you won’t soon forget.  Every day with Lily Lapp is a new adventure.  Life with this little girl is never boring.
Come see what life with Lily and her family is like in The Adventures of Lily Lapp Book One: Life with Lily.  Five year old Lily lives on an Amish farm in upstate New York with her parents and her little brothers.  Lily has a new little brother that she isn’t all that sure about.
Seems life has a lot of change in store for little Miss Lily.  New baby, a new teacher and her eyes are opening to a whole new world around her.  Lily Lapp is growing up Amish.  Come see what Life with Lily is all about!
Book two of The Adventures of Lily Lapp series is A New Home for Lily.  Sweet little Lily is seven now and moving to an entirely new community.  It’s hard being the new girl in town.
See what life is like for Lily now, in a new town where she has to learn to make new friends all while still finding adventures to keep her busy.  Lily meets Aaron Yoder, a boy who drives her crazy and later Lily finds heart to help rescue.  Lily also receives a new gift: another baby brother to love and grow with in her many adventures, though Lily has yet to understand why God doesn’t give her a baby sister.
The Adventures of Lily Lapp is a wonderful series with more books to come.  Each adventure with Lily is better than the last, as readers watch Lily grow up and follow along with her life and her mischief through her story.  Lily’s books will be a wonderful addition to homes every where.
These books are written with children ages 8-12 in mind.  At 272 pages, they are rather good sized chapter books.  Each chapter has a title, allowing young readers to break the stories down into manageable portions.  This also allows educators/parents to assign chapters to read a little easier.
My 10 year old could not wait to read about the life of Lily Lapp and immediately jumped into reading these books.  I allowed her to read them for leisure.  We will definitely be adding more books from the Lily Lapp series into our home in the future as they are released.
You can purchase The Adventures of Lily Lapp books through Baker Publishing Group for $12.99 in either paperback or ebook format.  For this review, we had beautifully printed paperback copies that I suspect will be read again and again in the future.

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