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!!

NEVER

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.

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!

JACK

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!

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.

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.

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.