Tuesday, November 13, 2012

How To Help A Seizure Victim

Being new to the epilepsy world, I don't know if the word victim, in reference to someone having a seizure, is politically correct.  But, it's really the only way I know how to word it at this point.  And, for those of you who know me, I'm not all that concerned with being politically correct anyway.

My last post gave lots of information about the different kinds of seizures and I promised to follow up with information on how to help somebody who is actually having a seizure.  So, I'm going to restate the ways a seizure can present itself and then give ways to help after each one.

1.  Loss of Awareness/Consciousness (focal seizure) - A person suddenly interrupts an activity and stares blankly.  This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing.  This can also cause strange sensations like smells or tastes.

If you come across somebody who is having a focal seizure just stay with them until they regain consciousness.  Time the seizure for them so they know approximately how long it lasted.  Once they regain consciousness ask them basic questions regarding their name, the date, etc....   Ask them if there's anybody you can call to sit with them if they need time to recover.  Stay with them until you know they are fully recovered as these seizures can sometimes be followed by tonic clonic seizures.

2.  Partial Body Convulsions/Involuntary Movement - Only part or one side of the body convulses or jerks, often rhythmically.  Sometimes people may collapse due to the kind of movement caused by the seizure.

Again, stay with them.  Time the seizure.  They may or may not know what's going on.  If they are unable to respond to you and the seizure has lasted more than a few minutes, it may be necessary to call for an ambulance as emergency medication might be necessary.  (I'm not as familiar with this kind of seizure, but it's always better to be safe than sorry.)  Once the seizure ends, stay with them until you are reassured that they have received the help they need.

3. Full Body Convulsions/Involuntary Movment - The entire body is convulsing or jerking.  The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. 

If a person presents with a full body, constant convulsion type of seizure, they will be completely unconscious and unable to respond.  First, clear the area, where they are laying, of any objects that they could bump into and cause injury.  Then, if possible, turn them to their left side and tip their chin down just slightly (as in CPR) to open up the airway.  Keep a hand on them and speak calmly to them.  Reassure them that they will be okay. And, in the mean time, time the seizure and call for emergency assistance if it lasts more than a few minutes.  If these seizures last too long, they could cause brain damage due to a lack of oxygen to the brain.  Stay with them until somebody they know is there to help.  This kind of seizure will often cause muscle pain and weakness as well as extreme fatigue once it's finished, so they will need assistance.  One other thing that everybody should know about tonic clonic seizures or any seizure for that matter.  People CANNOT swallow their tongue if they're seizing.  DO NOT EVER put any object in their mouth to hold their tongue down.  It could seriously injure or even kill them.  Like everybody else, they need their mouth clear of objects so they can breathe.

So, there you have it - the basics to handling a seizure.  Please know that I am not a physician and that I am new to the world of epilepsy and seizures.  This is the basics as I understand it.  I'm sure that when it comes to describing the types of seizures I've given some inaccurate information.  But, like I said, we really just need to know how to respond and I just told you everything the hospital told me so I should be good on that side of things.  The important thing is to be there for the person, help keep them safe, time the seizure and call for medical help if necessary.  And again, don't put anything in their mouth.  EVER.

Friday, November 9, 2012


Like I said in my last post, over two million Americans struggle with epilepsy.  The problem is that most people wouldn't know what to do if they came in contact with somebody having a full blown tonic-clonic (grand mal) seizure.  It's a scary thing that I haven't personally experienced and I honestly hope I never do.  But, because of my sons condition, I have to be prepared for the worst case scenario and so should you.  And once you are prepared, not only could you help a person who is having a seizure, I can also add you to my babysitting list.  It's pretty short, at this point, for this very reason, and I wouldn't mind having a nice long date with my honey.

With that, I want to share with you what I know about seizures.  My seizure knowledge is actually pretty basic.  I watched a couple of videos about seizures before Levi was released from the hospital in July and other than a couple of questions to Dr.Q. that's all the training I got.  But, it's really all I needed.  So, I'm going to share that with you.

Seizure Basics

There are several kinds of seizures that each present differently.  I stole the following chart off of WebMD.

Generalized Seizures
(Produced by the entire brain)
1.Tonic-Clonic "Grand Mal"Unconsciousness, convulsions, muscle rigidity
2. AbsenceBrief loss of awareness, can include fidgeting
3. MyoclonicSporadic (isolated), jerking movements
4. ClonicRepetitive, jerking movements
5. TonicMuscle stiffness, rigidity
6. AtonicLoss of muscle tone

Partial Seizures
(Produced by a small area of the brain)
1. Simple(awareness is retained)
a. Simple Motor
b. Simple Sensory
c. Simple Psychological
a. Jerking, muscle rigidity, spasms, head-turning
b. Unusual sensations affecting either the vision, hearing, smell taste, or touch
c. Memory or emotional disturbances
2. Complex
(Impairment of awareness)
Automatisms such as lip smacking, chewing, fidgeting, walking and other repetitive, involuntary but coordinated movements
3. Partial seizure with secondary generalizationSymptoms that are initially associated with a preservation of consciousness that then evolves into a loss of consciousness and convulsions.

So, as you see, there are ALL KINDS of seizures.  I honestly don't completely understand how everything is categorized, but the way I understand it is that seizures can cause three basic categories of physical reactions and it's the reactions that we need to be aware of, not the fancy names or what exactly is happening in the brain.  So here they are, in my own words:

1.  Loss of Awareness/Consciousness - A person suddenly interrupts an activity and stares blankly.  This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing.  This can also cause strange sensations like smells or tastes.

2.  Partial Body Convulsions/Involuntary Movement - Only part or one side of the body convulses or jerks, often rhythmically.  Sometimes they may collapse due to the kind of movement caused by the seizure.

3. Full Body Convulsions/Involuntary Movment - The entire body is convulsing or jerking.  The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. I'm pretty sure that Levi's seizures fit in this category. They were not tonic clonic as he was not constantly convulsing.  But, although it looked like only his head and arms were moving, when I held him I could actually feel his entire body jerking with each seizure.

A person's seizures can present in just one of these ways or in multiple ways.  For instance, it is not uncommon for a focal (staring) seizure to be followed by a tonic clonic seizure.

So, there you go.  That's everything I know about seizures and what happens if somebody is having one.  And, no, I didn't share what you should do if somebody is having a seizure.  This post is getting to be pretty long so I guess you'll just have to stay tuned!

Wednesday, October 31, 2012

Epilepsy Awareness Month

November is Epilepsy Awareness Month so I've changed my blog decor to hopefully help bring awareness.  I know, I should become a graphic designer, right?  Maybe not.  But, maybe the fact that I did a terrible job redesigning the look of my blog will draw attention to my cause.  Hey, negative attention is still attention!  Although, if anybody has any tips or wants to completely take over and make it look better just let me know.  I will let you do it.  As long as you make it look better....

Anyway, like I said, it's Epilepsy Awareness Month.  So BE AWARE!!  You never know when you might come across somebody who is having a seizure and needs YOUR help.  You can get educated about how to handle a seizure by taking the "Get Seizure Smart" quiz right here.  So, go ahead, take the quiz and I'll send you a piece of candy.  I really will as long as you let me know and tell me where to send it!  Please don't post your address in the comments section, though.  Not a good idea.

Along with posting about Levi's progress, this month I will be offering tips and facts about epilepsy and how you can be a support to the 2+ million Americans who suffer from this often debilitating condition.

In the mean time, Get Seizure Smart!!

Monday, October 29, 2012


This has not been an easy year in the Luntsford house.  It all started last September with Toby, two at the time, in the hospital with pneumonia while we were at a conference out of state.  That was followed by five straight weeks of sickness, ranging from sinus infections to the stomach flu, from late October to mid December.  We had a break through the rest of winter, but, in March, we discovered that my husband had a blood clot in his leg, which can be life threatening if it's not resolved quickly. He had shots to thin his blood every day for almost three weeks and then went on medication to keep it thinned so the clot would fully dissolve.  Except for one week, we either had house guests or were traveling from the last week of May to the second week of July.  The third week of July we were in the hospital for a week with Levi and the seizures.  And to top it off, I turned thirty in June.  I did NOT want to turn thirty.  But, just like the rest of the craziness that I didn't want, it happened anyway.  I can't change it.  I can't make it go away.  The only thing I can affect is how I respond to it all.  And, the only way I can respond is to remember that through it all my God will NEVER leave me or forsake me.  For my last post, I shared the lyrics to a song that has helped to carry me through this time.  I found it on YouTube and wanted to share it here.  Whether you're having a hard week or a hard year I want to encourage you to take some time to focus on the goodness of God.  He is NEVER changing, NEVER failing, NEVER giving up, NEVER leaving, NEVER forsaking.  He is only good.

Wednesday, October 10, 2012

The "A" Word

So, we had Levi's latest check up this past Friday.  Overall, it went very well.  He got to wear a hat with the electrodes for the EEG instead of having thirty-two electrodes individually super glued to his head and then individually scrubbed off leaving bits of glue and removing bits of scalp.  That was nice.  The wait was much shorter this time.  The EEG was at 7:30am and the checkup with the doctor at 12:45pm instead of 4:30pm.  Also nice.  We got home in time for dinner.  Very nice on the wallet.  The four lane highway, on the way there, that has been under construction for almost ten years, was finished, cutting about twenty minutes off the drive.  Very nice.  Like I said, overall, it went very well.

The appointment itself was pretty normal.  Dr. Q took well over an hour with us, which I greatly appreciate. Nothing worse than driving and waiting for seven hours to spend ten minutes with the doctor.  Not only did he give us lots of time, but he also remembered specifics about Levi and his case that I would never remember, especially if I were a neurology resident working thirty hour shifts (which he does do).  When I commented on that, he said, "Of course I remember. Levi is is special."  Have I mentioned that I LOVE Dr. Q?  Well, I LOVE him.  He makes me feel like Levi is not just an interesting case study, but an actual patient - a valuable patient.  I like that.  I want to hug him for that.  Would that be awkward?  

So, anyway, the appointment went well.  We reviewed Levi's EEG.  Where it previously showed activity that could cause seizures on both sides of his brain before, this time it showed the seizure potential was only on the left side.  Dr. Q didn't want me to be too excited about it because apparently the right side could have just been taking the day off of producing potential seizure activity - my words, not Dr. Q's.  His words - "I'm not quite sure what to think of it."  Okay.  I'll just believe that God is healing my baby.  But, I'm not going to freak out if next time it shows activity on both sides again.

As well as discussing the EEG, we also discussed medication.  We had to increase his meds which kills me a little bit.  But, Dr Q says that he's already being risky by giving Levi very lowest doses possible so even the slightest weight gain requires more meds.  So, I guess I understand that.  I prefer meds to more brain damaging seizures, or seizures of any kind for that matter.

The last thing we talked about was the "A" word - autism.  This was the hard part of the appointment.  As with any case of spasm type seizures, Levi is being constantly observed for traits that fall in the autism spectrum.  There are three of them - language delay, repetitive movements, and social delay.  According to Dr Q, Levi has two of the three - language delay and some possible repetitive movements.  He is recommending that we increase his therapies, especially speech, so we can be on top of it, rather than just treat it.  Mama doesn't like to hear this.  I'm happy to know he is actually quite high on the social scale, which is usually the hardest thing to deal with in cases of autism, but it's still not a nice conversation to have about my son.

To clarify - he has NOT been diagnosed with autism.  At this point, he only has two of the three traits and one of those, repetitive movement, is unclear.  He has to have all three, I believe, to be diagnosed.  But, that he doesn't have all three traits, apparently doesn't mean he won't develop social issues later.  So, we have to watch very closely.  I don't like it.  Just thinking of the possibility of my baby having autism is devastating.  It could make that suddenly steeper hill even steeper and higher, like forever higher, as in life-long struggle higher.  As in, everything I thought about how my life would be has just changed higher.  You never realize how many expectations you have for life until you realize they may not happen.

Now, the good news is that even if the "A" word is an issue, we'd be starting interventions very early which would give him a high chance of living a pretty normal life.  So, I'm not freaking out.... too much.  But, I will be honest, I feel like I'm going through a grieving process.  Either way, my life has changed, and forever, for the bad and the good.  It will never be the same.  Ever.  But, do you know what will be the same? Or maybe I should say WHO will be the same.  My Father God.  He is the same yesterday, today and forever!  He doesn't change!  He is good!  He has a plan!  He is Abba - Daddy God.  Forever.  Period.

With that, I'm going to leave you with the words to the chorus of a song that has carried me through this week:
Afterall, You are constant.  Afterall, You are only good.  Afterall, You are Sovereign.  Not for a moment, will you forsake me.

I'm so glad I can trust in Him!

Tuesday, October 2, 2012


Wow, it's been forever since I last posted anything.  I was out of town for, essentially, two weeks with just a little break to come home and do laundry before leaving again.  It was a fantastic two weeks, though!  And well worth the time away from my computer.  I probably needed a little disconnect from my little electronic universe anyway. :)

On top of being gone, my entire family, except for myself, got double pink eye.  DOUBLE.  In both eyes.  Not sure how it skipped over me. Grace of God, I guess!  So, the combination of the two has kept me well away from all of my friends.  I'm pretty sure it had been three weeks since I'd seen anybody until church this past Sunday when I finally saw EVERYBODY and got a dinner invite!  To say the least, I was ecstatic!  Things had been crazy enough that I didn't have the energy to cook a meal for my own family, much less somebody else so free, pre-cooked food and fellowship with good friends sounded like the perfect plan!

So after a chill kind of afternoon at home on Sunday afternoon, we headed over to see our friends, eat some chilli for dinner and watch "Bill Cosby Himself".  It's a classic.  I hadn't seen it since becoming a parent and it was that much more hilarious because of it.  If you haven't seen it, you need to, especially if you're a parent.  That's all I have to say about that.

I discovered something, though, while we were there, mostly watching the video while chasing our toddlers around.  Jack - a beautiful, curly, red haired boy, a ginger in the truest sense of the word - is not quite fourteen months old.  He's your average thirteen month old, in terms of development.  In terms of size, he's ginormous!  He's always been huge and is starting to grow into himself, but he's still huge all the same.  Let's just say this, Levi is eight months older than him and they've worn the same size of clothes since Jack was nine months and Levi seventeen months.  But, in terms of development, he's your average thirteen month-er.

And, this is what struck me.  As I watched Jack play, I realized that some of the things he was doing are things that Levi (twenty-one months) is just now learning to do.  It stung a bit to think that Levi is that far behind in some areas.  I don't think I really realized he was that delayed until that night.  Fortunately, this is not in all areas of development, but it is in some.  The good news is that even if Levi stays six to eight months behind for the rest of his life, eventually it won't be a distinguishable difference.  I mean, it's not like when he's thirty or forty people are going to be thinking, "Wow, he's a little slow for his age.  He's got to be at least, what, six, eight months behind?"  Ha!

But, the hard part is more the realization that I've got two years of raising a one year old mind.  We're having to teach him things we've already taught him.  We're having to rediscover how to discipline him since we're not even sure he knows what's going on at some points.  His weakest area of development (per early childhood screening) is communication, which can be very frustrating.  When you have a kid the size of a two year old who communicates like a one year old, it's frustrating.

So, that's going to be the hard part.  It's going to be uphill for awhile, and I think I'm just now realizing how steep the hill is and that it's a little higher than I thought.  But, it's still nowhere as steep as so many others' hills.  And this up hill battle will not get me down.  How can it?  It's going up!  Besides, the good news is that he WILL catch up sooner than later.  Thank you Jesus for that!

And thank You Jesus for good friends who make food and invite me over to eat it, hassle free!  What a blessing!

Tuesday, September 4, 2012

He Holds Us

I watched Levi's first birthday video the other day.  I must admit, I never do this.  I'm pretty sure I've never watched Toby's first birthday video, or his second, or his third.  But, three days ago, I found myself perusing through pictures on our computer when I ran into Levi's first birthday folder.  His face was so little, in comparison to now.  I wanted to see all of the pictures and remember what he used to look like pre-steroids.  Granted, it was eight months ago.  But, I was drawn to them all the same when I came across several little video files of presents and cake.  It was his first birthday, so of course we put the entire cake on his high chair tray and let him dig in.  Now, usually, I skip past the videos.  Not always.  Usually, though.  They just take so much more time - something a mom with two small boys doesn't have in surplus.

This time, though, I played the video.  I watched my beautiful boy as he daintily pinched at the frosting on the cake and stayed perfectly clean for the first five minutes.  He had an amazing pincer grasp if you ask me.  :)  I watched as he slowly began to dig in with his entire hand as he realized there was something under that frosting!  I watched him say "Bye Bye" to somebody as they left the room.  He waved his cake-filled hand enthusiastically, spraying cake and frosting all over the place.  Wait, he said "Bye Bye" and waved.  I realized that must have been something he had lost from the seizures because at eighteen months he wasn't doing that anymore. I had forgotten that he had been able to do it at all.  I watched him do a few more things that I wondered if he had lost from the seizures.

 But, then I watched him have a seizure.  Right there in his high chair!  On his birthday!  Six months before we ever saw them!  I replayed that segment of the video countless times wanting to be sure of what I was seeing.  After showing it to my husband and watching it about a gazillion times, my conclusion has stayed the same.  He had a seizure.  And who knows how long he'd been having them up until that point.  We thought that he had started having them somewhere between seventeen and eighteen months.  They're a subtle kind of seizure so we knew we'd probably missed a few episodes, but I never could have imagined that we'd been missing them for six months.

The crazy thing is that usually when babies have been having infantile spasms (the kind of seizure Levi has had) for as long as six months, they are cognitively gone.  I read one blog where a baby had them for just two months and lost all of his words, was not able to walk and four months in couldn't even sit up on his own anymore.  At ten years old, he was considered to have autism and was very behind developmentally.  I think about the few things that we were concerned about with Levi's development, but it was just a few and he's catching up so quickly.  He's almost on track for his age now.  But, he was having these spasms for at least six months!!

I never cease to be amazed at the goodness of God.  He holds us in His big, strong, amazing hands and never lets go.  Thank you Jesus for protecting my baby boy.

Monday, August 27, 2012

Leaps and Bounds

My baby's face is shrinking!!  I'm pretty sure not many people can say that with such enthusiasm.  We're something like five or six weeks without any seizures and three weeks off of the steroids.  Levi is back to his happy, dramatic little self and is making huge strides in his cognitive development.  He's suddenly communicating with us in ways that he should have been a few months back, but he's doing it all at once.  He's calling a few objects by name.  He's trying to get our attention.  He's using words and signs appropriately.  It's been very encouraging.  I don't remember if I've already mentioned this, but just before the seizures started, his doctor was a little concerned about his development.  There were several things that he wasn't doing that an eighteen month old should be able to do.  Being behind on one or two of those things can be completely normal, but he was behind in several.  His neurologist does attribute this to his seizures and said that all of this development happening so quickly after putting a stop to the seizures is a great sign that we've got the infantile spasms managed.

It's still been hard to deal with the concept of a child with epilepsy.  Life is pretty normal other than the morning and evening meds, but the idea of it has been difficult for me handle.  I've had so much support and encouragement from so many dear friends, though, and some days it has been those very thoughts and prayers that have helped me push through.  I had one comment, particularly, this past week that meant so much.  I've had so many texts and calls seeing how I'm doing, sending prayers, and sending youtube links about how good our God is.  But, for some reason, one little phrase from a friend put into words what I couldn't.

"That has to hurt your heart," she said.  It was a simple sentence - one little phrase.  It was the only thing that anybody has said to me, through all of this, that made me bawl my eyes out.  That was it.  The thing I couldn't put to words.  It wasn't some beautifully written card with eloquent words; it was one little, simple phrase, sent in a text.  And, for some reason , the tears that I cried when I read that phrase were like a salve to my hurting heart and I've been able to face each day with a new outlook.  Sure, my heart still hurts when I think about it.  But, in spite of everything, Levi is doing fine.  In fact, he's growing by leaps and bounds!  And, so am I.

Thank you, dear friend, for reaching out with the most simple, but heartfelt words.

Friday, August 17, 2012

Biking and Pajama Snacks

So, I finally feel like we're kind of catching up on life since we spent a week in the hospital and have had mountains of paper work and bills to catch up on.  We paid off the last of our debt this week (save the thousands of dollars of medical bills that we've now accumulated).  And, we're starting to get acclimated to life with a baby on scary medicine (he's doing great by the way).  All in all,  life is moving forward!  

J is working alot of extra hours, partially to make up for time missed, but mostly because he has a huge project due in a couple of months.  He worked from 8am to 3am the other day, which, unfortunately, is not necessarily a rare occurance.  He frequently works 8am to 9 or 10pm, but makes sure to get an evening or two a week at home with the fam.  Lately we've been biking together on his nights off.  We load the boys into our little bicycle trailer.  They're so cute all cramped up in that tiny, little space, bump bumping down the road.  (I wish I had a picture.)

The weather here has been so gorgeous, which has made our little jaunts so refreshing.  We'll usually go to a park and let the boys out to play and then take the long way home.  The boys laugh and talk through the whole ride.  I love it.  It makes the extra-long stay-at-home-mom days more bearable to have that quality time as a family.  I am truly blessed with an amazing family.

On a completely different note, I just gave my boys each a granola bar to snack on.  Toby must be growing as he's constantly complaining that he's hungry.  I, being the responsible mother that I am, handed them their granola bars and caught up on a couple of my friends' blogs.  The next thing I know, Toby is chasing Levi through the play room trying to eat an entire granola bar worth of crumbs that are matted to Levi's pajama pants.  For the most part, he succeeded.  And yes, it's 1:43pm and my boys are still in their pj's.  It's that kind of day. 

Friday, August 10, 2012

Tipping the Scale

I woke up bright-eyed and bushy-tailed this morning.  It felt good.  I hadn't done that since... who knows when?  I mean, I actually woke up before my boys!  That has happened like five times ever, and mostly because I had to, not because I wanted to.  Anyway, I woke up to the crisp, fresh morning air permeating my room; and it delivered a wonderful message - fall is coming!  It's just around the corner!  I went downstairs, started a pot of coffee and proceeded to open every window in the house.  I opened our back door and breathed in the day.  I think I breathed it all the way in to my soul.  With that breath came so many emotions - the joy of knowing I'm alive and have such a beautiful little family, the sweet melancholy that another season of my life is fading away, the ambition to get outside and savor every moment, and the lethargy to sleep this beautiful day away.  I love how this kind of day always brings such duplicity.  And, yet, I kind of hate it, too.

At this point, I seem to have given in to the latter emotions - melancholy and lethargy.  I had to increase the dose of Levi's seizure meds today.  This has been the plan all along; but it bothers me - alot.  I actually teared up as I opened that extra capsule and sprinkled it into the mushy bite of banana.  I know that it's helping to keep him seizure free, but I hate to think of what else it's doing to his body.  All of those negative side-effects are constantly floating in the back of my mind.  So, I think it was that moment that tipped the scale and dumped me right into the bleakness of a chilly, overcast day.

The beauty of this kind of day, though, is that the clouds will dissipate soon enough.  I'll make myself take the boys outside to play and I'll enjoy the warmth of the sun that counteracts the cool breeze.  I'll get the chance to take another breath.  And another.  It will be beautiful.  And, more than likely, it will tip the scale in the other direction.

Saturday, August 4, 2012

Seize the Day!

That's right, I've been waiting for the right time to use this title since I started.  I'm witty like that.  And a little twisted.... but I have to find humor in all of this somehow. :)  Now for the update:

It's official.  My son has epilepsy.  I know.  You're thinking, "But, your first post said he doesn't have epilepsy, he has infantile spasms.  I'm so confused!"  As was I.  But, I think I have a better understanding now.  Apparently infantile spasms fit under the larger umbrella of epilepsy.  The spasms are just one of the ways that epilepsy can present itself.  The good thing is that Levi doesn't have hypsarrhythmia (those bad brain patterns that can cause cognitive delay), which usually walks hand in hand with the spasms.  The stinky thing is that he has epilepsy.  In other words, the EEG showed that he has a low threshold in his brain for seizures and, therefore, he has seizures.  Thus.  Epilepsy.  The spasms are the way we first saw it presented, but he could have any kind of seizure.

All of this was FINALLY explained to me, yesterday, in a very clear manner by Dr. Q.  We like Dr. Q.  He's a good guy.  He's helping my son so of course we like him!  Along with explaining what's going on in Levi's head, he explained how we're going to manage Levi's seizures.  So, the new medicine that I spoke of in my last post... the yucky one.....the one I don't want Levi to take..... yah, Dr. Q said he has to take it.  He let me know that he would NOT prescribe medicine that isn't needed and that this is one of the most successful medications in preventing seizures.  He also said that the doses prescribed to Levi should have minimal effects on him at this age.  So, the plan is this: Over the next week and a half, Levi will complete his round of steroids which will also cancel out his need for Zantac and the antibiotics.  So, we get to remove three of his meds!  But, we started the yucky one tonight.

Levi will continue to be on this one until he has been seizure free for two years.  That's right, TWO YEARS.  It seems like forever.  We'll continue to have intermittent appointments and EEG's.  The next one is in two months and we'll go from there.  Dr Q did say that we'll have to continue to keep Levi under CONSTANT surveillance.  And I quote, "If you need to use the phone, keep the phone in the room with him.  Don't leave him in a room alone."  WHAT?! How am I supposed to cook dinner without him in the kitchen trying to throw himself into the oven?  How am I supposed to go to the bathroom?  Take a shower? (That last one already seems to be rare enough as it is)

And the answer is.......

(Drum roll please)

DO IT.  I just have to do it.  Sure it will be trying, but what can I do?  Throw myself onto the floor kicking and screaming?  Quit cooking and peeing and showering?  None of that will solve the problem.  It won't get anything done and it certainly won't make the seizures go away.  I just have to do it.  At this point, you might be thinking, "You go girl!  Way to have a positive outlook!  Way to stay strong!"  But, in all reality, the real reason that I'm writing this is because it's true.  Not because I'm excited about it or remotely want to "Just Do It" (Thanks alot, Nike!), but because I have to.  And this is me telling myself that.  I have to make the most of this season of life, whether it lasts two years or ten years.  I really do want this to make me into a better and stronger person.  Right now, I don't feel like that strong person.  I feel emotionally and physically exhausted and  I really don't know how I'm going to do it.  But, I do know that if I can truly rely on the grace of God and find my rest and satisfaction in Him, I can do anything.  (Now to get that from my head to my heart!)  As daunting as this is, I know I'll make it through.  We all will.  And if I can truly seize the day (ha! there it is!), I'll come out of this a stronger, better person and, hopefully, an even better mother.

I'd say that's true for all of us and our trials.  We all have them.  Maybe it's seizures, maybe it's finances, maybe it's rebellious teenagers.  But, if our prayer through these times can be, "Lord help me learn from this what you want me to learn.  Help me become who you want me to be," that's when, I believe, we truly learn to Seize the Day.

Thursday, August 2, 2012

Follow-up and More Meds?!

I know, my post titles are very creative these days.

So, we lowered the dosage of steroids last Saturday and we've still had no seizures so today we're lowering the dose even more!  I'm a little anxious, but it is exciting to get our normal Levi back.  He's already been sleeping better and acting more like himself again.  But his face.  His face is huge.  Now that he's acting more like himself he's looking less like himself and it's starting to get to me.  Don't get me wrong, it's stinking adorable.  But, when your baby doesn't look like your baby, it's disturbing, especially when it's because of the crazy chemicals you're pumping into his body.

Speaking of chemicals, the doctor called in yet another prescription for Levi - Topomax.  Studies show that if children start to take this new drug while they're weaning off of the steroids the likelihood for recurrence of seizures drops even more.   The negative thing is the side effects - drowsiness, dizziness, headaches, mental disconnect, nausea, tingling like pins and needles, and, my favorite, glaucoma.  Our doctor friend told me that doctor's refer to it as Stupid-max because of the effect it has on a person.  I haven't had the heart to give it to him yet.  We have our follow up appointment tomorrow and I'm waiting to ask exactly how much of a difference it can make.  I'd also like to be sure that the vitamin B6 isn't the cause.  It is a temporary drug - he'd be on it for 4 to 5 weeks - but I just can't do it until I know exactly how necessary it is and how to handle the side-effects.

So far, I've been doing pretty well emotionally.  But, I've been pretty emotional about this next appointment. First, Levi is going to need another EEG..  It was so terrible having that superglue matted in his hair.  Some of it is still there even after a haircut so I'm thinking of just buzzing his hair off.  But, I don't know if I can.  I tear up just thinking about it.  I've never been one to cry over a haircut, but combining a buzzed head with his massive face would just make him look even less like my baby and I don't know how well I'll handle that.

Haircut aside, I hate that he's going to have to go through all of this again.  I keep telling him it's going to happen and that he's going to be okay, but, of course, he doesn't get it.  The doctor says that he shouldn't need to stay the night which is good news, I think.  There's part of me, though,  (probably the same part that wanted to just move into the hospital and stay there so I could know Levi was being properly cared for) that wants to stay overnight.  I don't want Levi to go through all of that, be sent home, and then called back because they weren't sure about something and have to go through it all again.  I don't want them to miss anything.  I want them to see everything that goes on in his brain all night long and make sure he's not having seizures in his sleep, when I can't watch him.  At this point, all I can tell the doctor is that I haven't seen any seizures, but that doesn't mean he hasn't had any.  I want to KNOW that he's okay, and only they can determine that.

So, please be praying for peace over Levi when they superglue those stupid probes to his head, for peace for me when they say it's time to go home and I want to stay to make sure they didn't miss anything, and for peace over Levi's body, that the seizures will be completely gone and NEVER return.

Friday, July 27, 2012

Two Week Update

I talked to Levi's neurologist today and since there have been no obvious seizures we will begin giving him lower doses of the steroids starting tomorrow!  I'm very excited about this for several reasons.  First, I hate pumping chemicals into my children.  Second, hopefully his night time raging will come to an end and we will ALL sleep better.  But there is one more little benefit that will come from this.... by "little" benefit I mean hopefully he'll get little again!  I'm pretty sure I've already shared that the steroids make him absolutely ravenous.  After he's finished an adult-sized meal, he still wants more!!  So, to say the least, he's gained a little weight.  Most of it is water weight from the steroids, but the kid is HUGE.  His belly is so big that his belly button is COMPLETELY out.  COMPLETELY.  It's so big that Jeremiah was actually worried something was wrong with him.  His face has chubbed up so much that he can't open his mouth as wide as normal.  His lips are swelling too and are almost constantly pursed  because everything is so swollen.   I'm pretty sure he's gained three to five pounds in the two weeks that he's been on the juice.  So, the hope is that he will start to lose some of that water weight as we reduce his medication.

The scary part of it is that he could start having seizures again once we lower the dosage and we'd have to raise it back up.  So, please be praying for no seizures!!

We have our follow up appointment next Friday and he'll have to have another EEG.  So, I'm going to buzz his head.  I'm not a fan of the buzzhead look on little guys, but it will make it easier on him in the long run so that's what we're going to do.  The appointment should only take one day, but if he keeps having the night terrors (which could be a side-effect of the steroids or signs of seizures) after we lower the steroid dose, they might want to keep him overnight.  But, even then it would probably be just one night so I can't complain about that!

Well, there you go!  That's the news!

Here are Levi's before and after pictures.  Enjoy the chubbiness!





Wednesday, July 25, 2012

Some creative title about how life is going with Levi

This one will not be long.  I'm tired.  Tired and Emotional.  Tired because Levi has been up screaming throughout the night for the past three nights.  We're pretty sure it's the steroids.  I got two hours of very interrupted sleep last night and then another two hours split up and both equally interrupted this morning.  The night before wasn't as bad, but two nights ago was pretty rough.  I called and left a message for the doctor this morning and haven't heard back yet.  Hopefully we can give him melatonin or something.  I don't know how long I can do this without any sleep.  So, I'm tired.  Emotional because Levi has been  up screaming throughout the night for the past three nights (wait, I already said that).  I'm supposed to be going to a fun and free breakfast for artistic people in Minneapolis tomorrow morning.  I've been looking forward to it for weeks, but right now I'm so tired that I don't even want to go.  That makes me kind of emotional too.

So, there you go.  I don't want this to be a place where I can just vent so I hope I haven't been a downer to anybody.  We're still trusting God and Levi is doing well overall.  He's just not sleeping.  Even after getting such little sleep, himself, he still barely napped at all today.  It's currently an hour past his bedtime and he is up and rearing to go.  So, it's just where we are in the process of it all.  I wouldn't mind this part coming to an end very soon.  In the mean time, God is faithful and I know I can find my rest in Him.  I just have to actually do it.


Saturday, July 21, 2012

One Week

Levi has had one week free of seizures!  This is a good thing.  I think his meds were getting to him today so he wasn't quite himself again.  With all the days when he's perfectly normal, you think I'd be okay with a day or two like today but I'm not.  It just messes with me to see my baby so drugged and emotional.

The good news is that if he stays seizure free for another week, we'll begin to decrease the dose of steroids.  The scary things is that with this reduction the seizures could return.  We are hoping and praying that they never return, but as the doctors begin to regulate the medication, they could come back.  So, he could have to stay on the steroids for quite awhile (or forever). Our hope, though, is that we can completely eliminate all medication within the next couple of months.  There is a chance that this treatment could cure his seizures completely (a small chance, but a chance!).  So that's what we're praying for.  Feel free to join us!  :)

Lastly, Levi started yet another medication today.  Steroids lower our immune systems.  I knew this.  I've known several people who have stayed away from large groups of people and lived very cautiously because they were on steroids.  Apparently, Levi is on such a high dose of steroids, though, that his immune system is SO compromised that he now needs to take preventative antibiotics to help keep him from getting sick.  They're concerned that if he were to get sick, it would be severe.  So, he started his preventative antibiotics today.  Please also be praying that he stays healthy through all of this.  Most of you know how I hate pumping chemicals into my babies' bodies.  It's just not right!

So there you go, things are still looking up, but I am nervous that reducing the steroids won't work.  Thank you again for all of the prayers!

Wednesday, July 18, 2012

Meds, Moods, and Foods

Levi has been seizure free since Saturday!!!  I hope this means his steroid treatments are helping and maybe we can start reducing the dosage soon.  The steroids have been rough on him.  He's pretty up and down emotionally during the day and hasn't been sleeping well at night.  But, I've been watching the clock and have noticed a consistency between his moods and his meds which makes me feel better to know that it's not some permanent change in his personality from the seizures. 

Aside from being a bit moody, he's also HUNGRY all the time.  And I mean HUNGRY!!  He just can't seem to get enough food. Our amazing doctor friend said not to let him eat too much and to try to give him only healthy snacks since he'll be wanting to snack all the time.  I haven't been grocery shopping since a week before we were in the hospital so I don't have much to feed him.  But I'm going grocery shopping today and am hoping to find healthy, all-natural, very low-calorie snacks.  I do plan on steaming some veggies, but if you have any other ideas please leave me a comment!  I'm wracking my brain trying to think of stuff and just don't know what to do.   It's so hard to deny your child food when he's so obviously hungry and I don't think I'm doing a very good job at it.  Not that I think we're supposed to completely deny him food when he's hungry, but we do need to keep it very healthy and only until he's just satisfied.

Overall, I think we're adjusting as well as we can to all the medication.  His mood is getting a bit more consistent as time goes on and we'll figure out the food thing.  Most importantly, of course, is that he hasn't had any more seizures!!  We have a follow-up appointment on August 3 and possibly a short phone consultation before that to adjust the steroids (which they will need to be adjusted if he continues on this streak of no episodes!)  So, please continue to pray for no more seizures.  Apparently, there's a chance that if this treatment works, he can go off the meds and continue to be seizure free forever!  I do believe it's only a 30% chance, but I have hope for it!

Monday, July 16, 2012

Moving forward

As far as we know, Levi hasn't had any seizures since Saturday.  There have been a couple of jerks while he was sleeping, but it seemed more like the usual sleeping jerks than seizures and they didn't repeat in clusters like the normal ones do.  So, hopefully that means the steroids are working.  With that, though, the steroids are definitely affecting him.  He was either cranky, crying, or screaming from the time that he woke up till 6:00pm yesterday.  He did give us 3 or 4, 5-10 minute breaks.  But, overall, he was a mess.  He just wasn't himself and that was hard to deal with.  I feel like I can handle 17 different medications and shots and probes and whatever crazy tests or treatment we have to face, but when my son is not my son it kills me inside.  So, the past couple of days have been a bit more difficult emotionally.  It's all starting to soak in.  I'm really realizing that life is going to be different for awhile and I'm not quite okay with that yet.  But, I know I will be.  Why?  Because Jesus is holding me!  Here is a scripture he's speaking through today.  I'm saying it aloud as I type each word.

"My sheep hear my voice, and I know them, and they follow me; and I give eternal life to them, and they will never perish; and no one will snatch them out of my hand.  My Father who has given them to me is greater than all; and one is able to snatch them out of the Father's hand."  -John 10:27-29

Here's another scripture that I am speaking over Levi's life.

"For in Him all the fullness of Deity dwells in bodily form, and in Him you have been made complete, and He is the head over all rule and authority."  -Colossians 2:9-10

Lord, PLEASE, let Levi be made complete through You!

Sunday, July 15, 2012

Home Alone 2

That' right.  I planned the title for this post before I titled the last one.  The good thing is that since there were like five of those movies, I can write like three more posts before I have to come up with a creative title again.  The bad thing is my sense of humor.  But, I digress.

So, Levi is doing well.  He had four seizure on Friday, two yesterday, and none, so far, today.  He's doing pretty well taking his medication, which I can tell is starting to affect him.  Apparently steroids make you pee your entire body weight by the end of each day (this may be a slight stretch...) so Levi has had the most full diapers EVER.  Not a big issue to deal with so I'm not complaining.  The steroids are also having the usual side effects - irritability, aggressive behavior, hyper-activity.  As many of you will know, Levi is a very active child.  If I turn my back on him for more than three seconds he has either climbed up on top of the highest piece of furniture in the room or he has put some sort of choke hazard in his mouth.  In between climbing and eating everything, he runs.  There is no walking with him, only running and climbing.  That's pretty much a normal day with Levi.  So, now please imagine that sweet normal Levi with a little (or large) steroid boost.  Levi on steroids is even more active, but with a pinch of aggressive and a dollop of cranky.  But, he's still my sweet boy and I wouldn't have him any other way.

In other news, we broke down and bought wrist watches yesterday.  If Levi does have a seizure we have to be able to time it accurately and our phones just weren't cutting it.  It actually feels really weird to wear a watch again, but I'm getting used to it.  Of course our watch purchase is completely irrelevant to how Levi is doing, so feel free to skip this part.  Oops.  Too late.  I guess I should have said that before hand instead of after.  Sorry.

So, overall we're all doing well.  We're tired.  I'm still nervous about being able to properly parent a child who has seizures.  But, I have a firm belief that God gives kids the parents that they need to have and parents the kids that they need to have.  So, God must think we can do it.  So, we will.  With Him, we will!

Friday, July 13, 2012

Home Alone

They sent us home today.  Like I mentioned before, I don't know that I'm ready to be home, but here we are.  We're getting on with life.  It will be a whole new life, for awhile at least.  For instance, Levi had four seizures today.  My job, as stay-at-home-mom is to make sure none of those seizures last more than five minutes and that he doesn't have more than two in an hour, otherwise I have to administer emergency medication and call his doctors.  So, I pretty much have to watch him every moment of the day until we've found a treatment that manages the seizures.  And that is the next step - finding a successful treatment.

And the current treatment plan is:

We were sent home with five prescriptions!  We have already begun weaning him off of one, which will be finished tomorrow.  Another is the emergency medication that I mentioned previously, so we'll only use it if we absolutely have to.  But, that still leaves three that he has to take on a daily basis - the vitamin B6 - twice daily, prednisolone (a strong steroid) - 4 times/day, and Zantac once/day (because the steroid will upset his stomach).  So, they are hoping (WE are hoping) that the steroid will help to calm/stop the seizures.  We have a follow-up appointment in two weeks to determine whether the steroids are helping.  This will include another EEG (with all the wires connected to his head).  Depending on EEG results and whether the seizures have increased, stayed the same, or decreased they will either increase the steroid dosage, keep it the same, or begin to gradually decrease it.  We'll have another similar appointment 2 to 4 weeks after the initial follow-up appointment. The hope is that we can gradually taper Levi off of the steroids completely and stop the seizures altogether.  At the very least, though, we'd like to get them under control and potentially put him on a milder medication to manage them.

There will be more test results coming in a few weeks as well which could change the treatment plan if any of them come back revealing a specific cause for the seizures.

So, there you go.  This is the plan as I understand it. (Speaking of "as I understand it", I would like to throw a disclaimer out there.  All of the information/conclusions. in this and previous posts, from the doctors is "as I understand it".  Seizures are such a complicated condition that even the neurologists don't claim to completely understand them and then I'm expected to understand the neurologists as they try to explain something that they don't completely understand.  With that, I'm sure I have plenty of misconstrued information about seizures, etc...., but it's what I understand is going on at this point.)

Thanks again for the calls and texts and prayers!!  Even just seeing the huge numbers of people reading this everyday is amazing and so encouraging!  We have a HUGE support group.  Thank you!

Thursday, July 12, 2012


Neurologists came in this morning with results of the MRI.  There was some hyper-intensity in his brain on both sides, which just shows some immaturity in the brain, but they weren't too concerned about it and didn't feel that is was connected to the seizures.  They said his brain should continue to develop normally, but that it just seems like some of the physical development is just happening a little slow.  But, it will catch up.

With that, they weren't able to be conclusive regarding the cause of the seizures.  Levi did have the lumbar puncture yesterday to test for multiple issues, many of them being malabsorption problems.  In other words, they're checking to see if there are certain substances that his body is not absorbing correctly.  For instance, the vitamin B6 issue would be a malabsorption issue.  We'll have some results within a couple of days, but most of them will take as much as two to three weeks.  If it is not a malabsorption issue, they said it is likely to be a genetic problem.

They have prescribe steroids for Levi and want to keep him here for a couple of days to observe him while he gets started.  He will take these steroids for 4-6 weeks and then we'll have a follow up appointment with another EEG (NO FUN!!), which means we could be here for another couple of days 4-6 weeks from now.  Depending on results at that time, they may change his medication.  The doctor also gave me SOME hope that this is something he could grow out of.  Of course, this is after I asked.  :)

All of that said, I have to share this:  Since we've been here, Levi has actually reached a few developmental mile stones!!  Hearing this, the neurologist said that most children with his condition would be doing the opposite which made him fairly confident that Levi will be just fine developmentally!!  This just goes to prove that God is way bigger than our physical situations!

 A couple of pics of Levi this morning.  Too busy playing and climbing to take a decent picture.

Wednesday, July 11, 2012

A Little Update

 Daddy and Levi playing with his new toy from Nana.
(pre-turban removal)

Today they did a lumbar puncture and an MRI to try to determine the cause of the seizures and we haven't heard from them yet other than that they did see some abnormalities in his brain function.  We should find out, tomorrow, what they feel is causing the seizures and how they would like to treat them.  Of course, this could be a difficult prognosis so I'm hoping for the good news but preparing, mentally, for bad news.

Depending on how they want to manage the seizures, I suppose it is possible that we could go home tomorrow????  But, it's hard to tell.  I don't know that I'm ready to go home, anyway.  I just don't feel qualified to care for a toddler with seizures.  I guess that's my latest struggle, but this too shall pass.  It has to.  I have to move on some time, right? And, God is in charge!

Good News!!

Good News!!  The head neurologist just paid us a visit and said that Levi's condition is pretty positive considering the circumstances!  After further observation, they are finding that the background activity in his brain during non-seizure moments is not typical for his condition.  From what I understood, in most cases of infantile spasms, there is irregular brain activity even during non-seizure times, but for Levi the more dangerous irregular activity only occurs during the seizure.  This is a sign that the condition shouldn't cause any developmental delays.  They said he is still having the spasms, but they think that since he presented symptoms so much later than most (it usually presents as early as 2 months) that the effects on his development will probably be minimal.  Nothing is conclusive of course, but he was more on the positive side.  Levi does have some slowing in the left side of his brain and they will be trying to determine the cause of this with the tests today - MRI, lumbar puncture and blood work - at around 1:30.

The other good news is that they have finally removed the EEG probes!!!  My baby is free to wonder around again without constraint! 

Please continue to be praying about the results of today's testing since the cause of the seizures are unknown and could still require serious treatment.  BUT, overall, the neurologist's outlook is a bit more positive than it was yesterday afternoon!!  Thank you JESUS!!

We'll keep you posted!

Here are a few more pics of Levi with his "hat", without his "hat", and with the probes ALL GONE!!

Levi with his baby who also had an EEG.  Too sweet not to share

After the gauze was removed, but still connected to the probes.

ALL DONE!!!  No more probes!  No more wires to trip over!  We went to the playroom after this!

Tuesday, July 10, 2012


I'm pretty sure I'm stuck right in the middle of one of the most life-changing weeks of my life.  It's right up there with getting married and having babies only on the other side of the spectrum.  I'm not really that excited about the changes that are taking place.  But, since this week has such potential to completely alter how I live my life I want to document what's happening.  As rough as this week has been (so far), I want to remember it and I know alot of people who probably have alot of questions about what's happening so here goes....

It all started just over a month ago.  I was laying, face down, on the chiropractors table while Levi sat in the stroller playing with a toy.  At one point, my chiropractor stopped and asked me to get up and look at my son.  So, I did.  She was concerned because he had started jerking forward, as though he were falling asleep with his eyes open, every twenty to thirty seconds.  I only saw a couple of small jerks and Levi responded well to me when I approached him so I attributed it to a sleepy baby.  Levi had his eighteen month appointment just a couple of weeks later so, with some tips from my mom (a nurse), I watched for any other seizure-type symptoms.

I did see a couple of minor things that were concerning so I made sure to mention it to his doctor who said to keep watching and call if it got worse.  One week and one day later - this past Saturday - Levi had another episode.  A big one.  At about 10:15am, Levi started trembling and then repeating the jerking motion that had occurred at the chiropractor.  One single (falling asleep with his eyes open-like) jerk every ten to fifteen seconds.  We grabbed the camera and taped the episode.  It lasted for about 3 minutes, but after it was over he was almost completely unresponsive and just slept for almost an hour.  Our dear doctor friend, Roger Crouse, told us if it happened again to go to the E.R., but otherwise make an appointment with a neurologist.

It happened again.

That evening just before 6:00pm, he did the same thing.  We briefly contemplated waiting for an appointment, but THANK GOD we didn't.  Jeremiah, my mom and I took him in to the E.R. where he had yet another episode.  Because he had no known history of seizures, they felt we should stay over night, but gave us the option to go to Mayo Clinic hospital an hour and a half away in Rochester, MN.  They have a pediatric neurology team.  So, we packed up, made the drive to Mayo Clinic and after check-in and check-up's we finally made it to bed around 4:00am.

On Sunday we waited.  And waited.   And, yes, we waited some more.  The neurologists were wanting to see an episode and they just weren't.  Sometime in the mid-afternoon, the pediatrician came in and said since Levi hadn't had any more episodes, they had decided to release him and schedule some follow-up appointments for later in the week.  I was so frustrated because I KNEW something wasn't right, but they weren't convinced.  As the pediatrician left the room I said a little prayer, "God, if we need to be here, please let them see what they need to see!"  I hadn't even completely finished the thought when Levi started another episode.  This episode was a smaller one, but Levi was very disoriented afterward. The doctor hadn't been out for even a minute.  We were able to get a nurse who witnessed the end of it.

We stayed.

Well, I stayed.  Jeremiah has a huge project due on Thursday so he had to go home so he could go to work.  Plus, we wanted one of us to be with Toby since we'd already been gone for an entire day.

The neurology team scheduled an EEG for Monday morning.  EEG's are a way of measuring a person's brainwaves in hopes of catching any unusual activity.  EEG's can last anywhere from one hour to five days, and are a NIGHTMARE for an eighteen month old.  They had to literally super glue thirty-two small, sequin-sized probes to his head.  The process went something like this:  Measure head, make thirty-two marks on head, put super glue and probe on head, put a little straw type thing that blows air on the probe to dry the glue, repeat until all thirty-two probes are glued on, put a blunt, needle sized object inside of each probe and scrape skin off of head to increase electrical connectivity, fill each probe with some weird electrical gel formula, fill each probe with lotion, wrap head in gauze, cover in another layer of a gauze-like stocking cap, add lots of tape and hope it works.  To say the least, Levi hated it.

Mom had come over that morning so she had to help us hold my baby down for almost one hour of torture.  He screamed and thrashed the entire time until it threw him into another episode.  Yes!  The probes were on! He had an episode! They got it recorded!!  Kind of.  But, it wasn't a good enough recording since they were still wrapping his head when it happened which distorted the reading, Sooooooo...... we waited some more.  We did get to come back to our room, but Levi can't leave until the observation is over because he's hardwired to the wall and they're video taping his every move.  The neurologists said we had to wait until he had another episode.

In the mean time, Monday morning's episode left Levi even more disoriented than before.  His responses were very minimal and very slow while he was awake and then he slept for almost four hours afterward.  He was fine after he awoke.  But, we thought that maybe his slowness and disorientation would leave answers on the EEG for the doctors.  Nope.  So, we stayed another night, waiting for another episode; hoping it would happen; hoping it wouldn't happen.  Ever again. 

It happened.  He had another episode yesterday morning and the neurology team was able to get a good reading from it.  Levi's response to this episode was probably the hardest thing I've had to deal with so far.  He had a few minutes of very slow, disconnected mental response.  And then, at one point, he was looking at me and instantly fell asleep.  He slept for almost five hours.  From 12:45 until some time between 5:00 and 6:00.  But, it was a DEEP, HARD sleep.  He wouldn't wake up for anything.  He didn't even stir.  At all.  I'd been doing pretty well until this point, but I couldn't help but worry he would never wake up.  I've never seen anybody sleep so hard.

It was during this time that the neurologist in charge of our case came in with the diagnosis -  Infantile spasms.  Have you ever wished your kid had epilepsy?  I have.  Infantile spasms were the last thing I wanted to hear.  Epilepsy is usually pretty easily managed, kids frequently grow out of it, and the seizures don't tend to be dangerous.  Infantile spasms can be more difficult to manage, kids can grow out of them (they didn't want us to get our hopes up, though), but the seizures can be dangerous.  Most children diagnosed with infantile spasms are developmentally delayed because of their seizures.  The good news is that we caught it early so there's a chance that if we are able to manage Levi's seizures he may not experience any developmental issues, but again, the neurologist didn't want to give us false hope. (Something to be praying for!) The other good news is that sometimes infantile spasms can be caused simply by a deficiency of vitamin B6 so Levi was immediately treated with a high dose of vitamin B6.  If this is the cause for his seizures he may just need to have his B6 monitored and he could never have any more issues ever again.  It could start working immediately, but it might also take a few days. PLEASE PLEASE PLEASE, I can't say it enough, PLEASE pray that this is the case.  If a vitamin deficiency isn't the cause, the treatment and management can become much more complicated.  Depending on the cause, we'd have three options: 1. One medication that may or may not do a good job managing the seizures 2. another medication that frequently causes peripheral blindness that tends to spread 3. Brain surgery.

So, you see why I'm pleading with you to pray for a vitamin deficiency!  Levi will have an MRI today (Wednesday) as well as a lumbar puncture, urine test, and blood tests so doctors can try to find the cause of these seizures.  Once they find the cause it could take another day or two to get treatment managed.  I have a feeling that whatever treatment is necessary, even brain surgery, they'll want to do it as soon as possible as his seizures are taking more out of him every time.  But, we just don't know what will happen.  I could be wrong. 

So, now you know the details.  As I read over them I'm amazed at the great measure of peace I have.  I do have my moments, but I'm able to have a short cry and move on.  God gave me Levi.  God has a plan for his life and I know that He will carry it out.  I'm not freaking out.  I'm not angry.  I'm not scared.  In fact, at my worst moments, when I start to cry, I'm overwhelmed with thankfulness.  I know that God's in charge and I'm not (thanks Wendell Nickerson!!).  He's got it covered, whatever happens, and I'm so thankful for that.  I'm thankful for Levi, whether he's Levi with seizures or Levi without seizures (preferably without:).  I'm thankful that I have not been able to keep up with the texts and calls of everyone who is praying for us.  I'm thankful that no matter what happens, no matter how hard this next season of life could be God is still God - Comforter, Prince of Peace, Immanuel, Father, friend.  He really is all I need.

Thank you everyone who is praying.  Thanks for the encouraging calls, texts and emails.  Thank you Lord that you WILL have your way and that you are holding us in your hands.

I'll keep you posted....

Here are a couple of songs that have carried me through:



Friday, May 25, 2012

Table Salt

"Talent is cheaper than table salt. What separates the talented individual from the successful one is a lot of hard work."  -Stephen King

I totally stole this quote from a friend on facebook.  First, this friend, one of my voice teachers from school, has earned the right to post such a quote as I consider him to be very successful.  Patrick Howle is an excellent teacher, an amazing performer, and has one of the most beautiful baritone voices that I have had the privilege to hear.  If you ask me, he's up there with Sam Ramey (whom I have met-just to brag a little).  Why?  He works hard.

The other day, I went to a local production of "Fiddler on the Roof".  It was actually an amazing performance, especially considering that we're a smaller community.  But this small community is one that values the arts and therefore, I got to see a beautiful performance of Fiddler with a Tevye who could almost stand in for Topol.  Almost.  The thing is, as I sat there in those rickety theater seats, I felt like I was home, like I belonged there.  I always do.  Every time I find myself sitting in front of a stage I can't help but feel like I was created to be on the stage.  Don't get me wrong, it's not about getting the lead role and having bouquets of flowers thrown at me as I end a performance with the perfect high C, or D,.... or E. (Though that would be a cool experience)  I'd be happy to be in the chorus, as an extra, just filling in the background and helping to set the stage (ha. literally!) for the actual diva.  No.  It's not about being the center of attention.  It's about doing what I was made to do.  It's about filling an entire room with music that echoes through every body in the room. 

Since I graduated with my bachelors in music degree almost six years ago, I've gotten married, had two children and somehow managed to be just busy and/or lazy enough to lose sight of my aspirations.  I've barely practiced and I have lost a lot of my vocal ability.  I still want to return to school and get my graduate degree, but it's going to take at least a year, maybe two, just to get my voice back into shape and be prepared for graduate auditions.  You'd think that being a stay-at-home mom would leave me all the time in the world, but somehow I manage to just keep up with life and not much more.  How you working moms do it - I don't know. 

Now, I don't plan on abandoning my children and husband to chase my dreams - after God, they're my highest calling and this is my season of Mom, but I do want to be prepared for the next step.  However that looks and whenever it is, I somehow need to make the time and muster up the motivation to work hard and be the best at what God has created me to be - wife and mom first, musician, singer, diva, composer, actor, director - whatever helps me best glorify my God.  I just want it to be worth more than a little table salt.  I want to be worth my weight in gold.  (Which considering my actual weight, could be alot!) :)

Friday, May 18, 2012

[5in5] Day 5: Bless You and Keep You

This one was written as a huge group effort.  Props to Dennis Jamison, Michelle Jamison, Shelden Jamison, Molly Jamison, Autumn Bedore, and Keira Luntsford (that's me! :)

May the Lord bless you and keep you
Let his face shine on you
And be gracious  unto you
Let his countenance shine through you
And give you peace

May His presence rain upon you
May you know His grace
Would that you would know his glory
As you see His face

He is ever faithful.  He is always there.

Jesus.  Immanuel. Prince of Peace. Mighty God.

Thursday, May 17, 2012

[5in5] Day 4: Dandelions

Breaking ground, planting seeds
Turning dirt and pulling weeds
Tend the garden, help it grow...  ow ow
But one nuisance will not go
those Dandelions

Sometimes the little things get in the way;
Try to remove them but they stay
Just look past them and enjoy the day
Just Ignore...
those Dandelions

Take a deep breath, soak in the sun
Here comes kiddo number one
Holds out his hand, opens his fist... oh oh
Offering Mom a beautiful gift
of Dandelions

Sometimes the little things that get in the way
Surprisingly they brighten up my day
A heartfelt gift that makes me say
I Adore...
those Dandelions

How'd this unwelcome guest become so wonderful?
A dozen dozen roses couldn't be as beautiful.

Paint a picture with my life
May my Lord be glorified
Even though I try my best
So often I just make a mess
But my best is all I have
So I'm Offering....
My Dandelions

Wednesday, May 16, 2012

[5in5] Day 3: Bless the Lord

Bless the Lord
Oh my soul
Let all that is within me
Bless His holy name

Oh my soul
Bless the Lord
Don't forget His goodness

Let creation sing with all the heavens
Let the earth bless His holy name

Bless the Lord
Oh my soul
Let all that is within me
Bless His holy name

Oh my soul
Bless the Lord
Remember His amazing love
His perfect and redeeming love
His always and forever love
Bless the Lord

Tuesday, May 15, 2012

[5in5] Day 2: FOR THE WORLD


Six AM,  I just want to sleep in
My babies are up with the sun again
I'm going crazy
Just want to stay in my bed

I was up all night just trying to write
Some music that would shed some light
On this craziness
That's going on in my head

I can't remember a full night of sleep
I'd like to get the chance to just count sheep

Laundry's piling everywhere
Almost out of underwear
Mold in the shower
Who has time for romance?

Snot and Slobber, Orajel
Diapers from the pit of xxxx
I need a shower
If I can just get the chance

I had a date today with Mr. Clean
But he took off as soon as he heard my teething baby scream

But it's worth it
Yah it's worth it
I wouldn't trade it
For the World.

Monday, May 14, 2012

[5in5] Day 1: LET GO


Grasping at straws
Watching them slip through my fingers
It's time for a pause
Just to let go and remember

Handing my worries over to You
Leaving my burdens at Your feet

I'm gonna let go
Surrender control
My life's not my own
I'm gonna abdicate this throne
That I built for me

I'm trusting the Lord
I'm not gonna lean on what I know
Cuz I can't afford
To keep thinking I am in control

Handing my worries over to You
Leaving my burdens at Your feet

I'm gonna let go
Surrender control
My life's not my own
I'm gonna abdicate this throne
That I built for me