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!