Seizure Monster

Oh, Seizure Monster, how we hate Thee!  Today started out so peacefully.  I had the morning to myself to get things done, and it was wonderful!  Our afternoon was set to be full of appointments- physical and occupational therapy for Lucy and a check-up for Conner (he needs one for school).
*PURPLE is being used in this post bc it is the color that represent Epilepsy

Shortly before loading Lucy into the van, I noticed that she had one of her "hard seizures", which are not gran-mal, or the type you think of with every body part shaking.  However, her hard seizures DO affect her entire body.  The seizure I saw was only a couple of seconds long, so I just decided to watch her.  Once in the car, Lucy started having them, almost non-stop.  These back-to-back seizures are called "clusters".  We picked Conner up and Lucy continued to seize, on and off.  Instead of going to therapy and instead of making Conner's appointment,  I decided we needed to go straight to the ER.

When we pulled up to OU, Lucy was still seizing until we got to the elevators.  Then . . .  she was FINE.  We call this, "back to baseline".  She acted totally herself, giggles and all!  I decided to take her quickly to the Neurology dept and have a nurse take an immediate look at her, rather than waiting in the ER, knowing that even at the best, she wouldn't be evaluated for several minutes and even then, they would need to get a history.  This was a split-decision and one that was hard to make.  God was so good though because once we got upstairs, as Lucy started seizing again, they took us right back into the clinic.  Our doctor came to see us, which is HUGE, seeing that she stepped out of clinic to do so..  The neurology clinic at OU is in high demand and it takes months to be seen in the clinic.  For our doctor to step away and come quickly to us . . . well, it's a sign of a great doctor! Lucy was evaluated, and her breathing and other sats were stable, so we were able to set up a plan and increased her meds. It looks like Miss Lu Lu has had quite the growth spurt and many has "just" outgrown her current doses.  That's our hope  - that this is all from her weight gain and that this increase isn't a sign of illness or progression of NKH. 


I was disheartened Lucy seized on our way home and has seized on and off all evening.  We've followed our doctor's directions and have recently given rescue meds.  If she continues to seize, we will need to go back to the hospital.  Please pray that seizures will STOP right this moment and that they will stay away for good!  

Air Conditioner - this seemed to little compared to Lucy's health, but it just added to the stress.  This summer, our air conditioner broke and we were able to fix it, but they had told us it was on it's last leg and the next time it failed, we would need a brand new one.  EEEEK!  When it was 78 degrees with the air trying to blow, my heart sank.  The thought came to mind to turn it off while I took Lucy to the ER.  It couldn't hurt, right?  When came back several hours later, I turned back on and headed to my Parent's house to rest in the cool air.  I went back to check on it an hour later and there was no change.  Dang it!  I prayed and I know many of you were praying too.  I left it on and went back.  When Mike stopped by the house after work, the house was cooling off!  And by the time we came back around 830, it was back to normal and is STILL RUNNING!!  I believe God touched our air conditioner and healed it, at least for the time being.  We are SO grateful for your petitions on behalf of something as little as our air conditioner!  God is SO good! We are still in amazement today!


UPDATE for TODAY, 8/24/16:

After the rescue meds were given last night, we saw NO sign of seizure activity. Lucy slept well but hasn't been to baseline, hasn't been back to herself, yet today.  She's had more seizures this morning, so we've called the Neurologist and we are waiting to hear what to do next.   Her body is likely exhausted from the trauma and from the increase in meds, but even with all of that, we wouldn't expect seizures to continue.

I so appreciate your love, prayers and encouragement.  Our Church, Bridgeway, jumped up and into action yesterday, already loving on us in word and deed.  Those texts, those emails, those calls, those visits . . . you don't know how much they mean.  We often feel isolated, even after all of these years.  Yes, WE feel alone and don't have as many close friends as you might think (although we have a great group of support and love).  So when people reach out in love and concern, it touches us and lifts our spirits more than I can fully explain.  

SEIZURE Explanation:  I know all of this can be so confusing and even scary, esp when you see seizures on TV where people are dying, or when a person is in a terrible situation, laying in the ER with perplexed doctors. I'd like to try to clear some things up, at least from a "Seizure Mom", so to speak.

No matter what, Seizures ARE scary and you DO want to stop them.  With NKH (and other neurological disorders and diseases), we must expect seizures because they come with the disorder.  Not ALL seizures call for a trip to the ER, and any "seizure-mommy" will tell you the same thing.  Sometimes the best thing to do is to stay at home and try to get through the seizures.  Moms/Dads/Guardians must use their best judgement and go with their gut when seizures occur.  It's important for us to be in tune with our child and also be informed as well as possible.

The time to call 911 or a time to go to the ER would be one of these things 

(although not limited to, and this is my opinion only).  

1. If a person, without a history of seizures, starts to seize/if you are with a stranger who starts to seize - call 911
2. If your child starts holding their breath and starts turning blue during seizure - call 911
3. If a child hurts themselves during a seizure (they may bleed or have a concussion) - call 911
4. If your child has a high fever and starts seizing - call 911 or take to the ER immediately
5. If the seizure lasts longer than 2-5 minutes, call 911
6. If clusters don't stop, especially for over 30 mins (after rescue meds), call 911 or take to the ER
7. If you are a care giver and don't know how to give rescue meds, call 911 or take to the ER (and contact parents)

Oh, Friends! THANK YOU for your continued prayers for today, and for Miss Lucy.  We also have a very important meeting for Henry late morning, so we are asking the Lord to balance all of that out, while protecting BOTH children in the process.  Our lives are definitely ones of pure TRUST and God shows us over and over again, that WE are not in control.  We are forever grateful for those reminders, even if they hurt.  HE is glorified and we know He does these things for OUR good.  

We'll Keep You Posted - 

Ryan

Miracle

"It's not just the most important miracle ever.  It's not just the most astounding event in the life of the Messiah.  It's not just an essential item in your theological outline.  It's not just the reason for the most important celebratory season of the church.  It's meant to be the window through which you view all of life." - Paul David Tripp

This week, a Dear Friend sent me this beautiful devotional from Paul David Tripp's New Morning Mercies.  Cheri McNeill just buried her husband, not even a week ago, and yet she sent me this encouraging word concerning resurrection and our forever life with Christ.  She did this because the Lord prompted her too, because He is ALIVE in her, even in death; because like her, part of my heart is already in Heaven, and she wanted to also encourage my heart this Easter week.  DEATH does NOT WIN! 

I was so breathtakingly moved by the level of wisdom Tripp used as he beautifully unfolded these Truths.  This devotional laid it out so clearly for me that I HAD to share with you.  The Body of Christ NEEDS to be reminded these things, and what better time than at Easter? I take no credit for the contents as the words are from David Tripp.  I have simply shared my heart with the words in blue.   

2 Corinthians 4:13-15, "(We know) that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence .  For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God."

"What does it look like to look at life through the window of the resurrection?", asks Tripp, "What about the resurrection must I remember?" . . .  What's important for me to know about Easter and the resurrection as a Believer?

1. The resurrection of Jesus guarantees your resurrection too.  Life is not constantly repeating the cycle of the same old same old.  No, under God's rule this world is marching toward a conclusion.  Your life is being carried to a glorious end.  There will be a moment when God will raise you out of the broken world, and sin and suffering will be no more! (exclamation mine)

2.  The resurrection tells you what Jesus is now doing, Jesus now reigns.  I Corinthians 15 says that he will continue to reign until the final enemy is under his feet.  You see, your world is not out of control but under the careful control of One who is still doing his sin-defeating work.  Even though my life feels out of control most days, I can rest in the fact that God is overseeing it.  He is allowing and controlling all things.  My world feels chaotic, but I choose to trust the promise of God who reigns over this broken world as well as over the maladies of my life.  

3.  The resurrection promises you all the grace you need between Jesus's resurrection and yours.  If your end has already been guaranteed, then all the grace you need along the way has been guaranteed as well, or you would never make it to your appointed end.  Future grace always carries with it the promise of present grace.  Grace: the disposition to or an act or instance of kindness, courtesy, or clemency; unmerited divine assistance given humans for their regeneration or sanctification (Merriam Webster).  

4.  The resurrection of Jesus motivates you to do what is right, no matter what you are facing.  The resurrection tells you that God WILL WIN.  Sin WILL BE DEFEATED.  Righteousness WILL overcome evil.  This means that everything you do in God's name is worth it, no matter what the cost. Did you catch that, ya'll?  It is WORTH IT.  NO MATTER WHAT THE COST.    Believer, what you are facing, what you are struggling with . . . it is SO worth it! 

5.  The resurrection tells you that you always have a reason for thanks.  Quite apart from anything you have earned, you have been welcomed into the most exciting story ever and have been granted a future of JOY and PEACE FOREVER.  I will not only experience peace and love forever (believe me, I am longing for that just as you are); I will experience LIFE with Ellie Kate and Lucy FOREVER!  And it isn't because of anything I have done or haven't done (thank you, Lord!).  For this, I will live a life of thanksgiving - how could I not "go tell it on the mountain"? because of this great grace and redemption?! 
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Truthfully, I would not have chosen this exact life, these exact circumstances and illnesses for myself or for my precious family (especially for my children).  But, with all of my heart, I choose to trust Jesus, My Lord.  How can that be possible?  Oh Friend, let me tell you!

Every human born on this earth has a sinful heart, a sinful nature - we are pre-disposed to it.  The payment of all sin is death.  Plain and simple - you sin, you must pay the penalty of death. BUT, we have a Savior.  The Father God sent His one and only Son, Jesus to live on this earth just as you and me.  He experienced every single emotion and every single temptation, and yet He did not sin.  He never messed up, broke a promise, cursed God, lied to his earthly parents.  Jesus is the blameless, spotless sacrifice for our sin.  He CHOSE to be the payment for my sin and for yours.  He chose to pay the payment for sin, in your place, because of His great, unimaginable love for you.

When Jesus died on the cross, He thought of you and He thought of me.  On that day, on that cross, Jesus had the sin of every man for all time, on His shoulders.  Jesus lay in His tomb for three days before his miraculous resurrection.  Jesus rose from the grave, up from death; and on that day, Jesus conquered death.  For those who believe in Him, there will only be an earthly death of our body.  There will be NO DEATH of our spirit - our spirit will live forever with Jesus, perfected and whole!  Did you catch that?  For the Believer, there is no death.

Do you wonder if there is something more in life?  Do you feel lost or alone, afraid of what the future holds?  Do you long for a secure eternity and a life that does not end?  Come to Jesus.  Invite Him in.  No magic words, no perfect words, no right words.  Just start a conversation between you and the God of the universe.  Choose to trust Him as God.  Choose to trust Jesus, who gave His life for you.  Choose to believe in that Jesus rose from the dead.  Choose and receive your true freedom.  There is no freedom apart from Christ.  

And Believer, once you have given your life to Jesus, do not forget the incredible cost of the cross.  Remember the truths that David Tripp laid out so clearly.  Take these things with you.  Rejoice over them at every moment and realize the freedom and future that you have in Jesus.  

He Is Risen!
Ryan