#40forLogan

Let's take a little stroll down memory lane.  Or for those of you who are new to us, this will serve as a little backdrop to who we are now.

When Logan was born, and was twice the size of our first child, I figured we had done something right.  As he slept while I vacuumed beside his crib, only cried when he was hungry and was  generally a very happy and content baby I knew our family was complete.  Why mess with success, right?  We struggled as new parents with Freddie, but by this point I really felt like we were going to hit our stride.  Get into our groove.  Live that fairy tale life I had imagined with two little blonde haired, blue eyed boys.

But when Logan was just over 3 months of age, my little fairy tale took a detour.

Logan began having seizures, was diagnosed with Polymicrogyria and we were basically told to get ready.  Life was going to be hard and there was little we could do to change it.

I'm thankful that God doesn't then show us the crystal ball allowing us to actually see what hard looks like.  I'm not sure I could have put the pieces of our lives back together knowing that was where we were headed.

And I'm also glad that scattered along this journey, planted at strategic crossroads, God placed precious souls to lead us in the right direction.  For us it was some of Logan's doctors (his pediatrician and our friend, Ashley, his epileptologist, Dr. Bailey) and Pat Gibson with the Epilepsy Foundation of North Carolina.

Logan was originally diagnosed with Polymicrogyria - a brain malformation.  It essentially means that his brain has too many small folds.  The left side of his brain is the most affected (which is why his rigth side is weaker), but we've been told multiple times that both sides of his brain are affected.

As time went on we added Infintile Spasms, Cerebral Palsy, At Risk for Intellectual Disability, Lennox Gastaut Syndrome and Intractable Epilepsy to the diagnosis list.  He has had surgeries for various things, most of which are not related to his brain, along with multiple MRIs and EEGs.

I've lost count of blood draws and think we stopped at 3 spinal taps and he got a feeding tube when we was just over a year old.

Developmentally he has not quite reached the one year old milestones, yet he is on the downhill slope to age 7.

He started physical therapy around 8 months of age, with occupational and speech therapy following soon after.

We have mulitple types of durable medical equipment (wheelchair, stander, gait trainer, lift, bath/potty chair) in our home as well as a nurse that takes care of Logan 40 hours per week.

Over the past 6 years Logan has tried about 15 different seizure medications, most of which he tried before he was 2.  They all come with scary potential side effects and the possibility of long term complications. We find ourselves having the "risk versus reward" conversation with Logan's doctors often.

We also tried the Ketogenic Diet when he was 18 months old which worked miracles for seven months.  But slowly the seizures returned and about 2 years later we discontinued the diet.

During the first year of his life he was hospitalized more than I have been in my entire life, (and I got hurt quite a bit as a child!).  We were there almost once a month for a while and got to know the hospital staff fairly well. We started trying to reserve the "ocean view" rooms - they had better wi-fi.   The trips were mainly for multiple respiratory infections, uncontrolled seizures, infintile spasms and then learning to administer the medication to treat the infintile spasms (homormone treatment in which each of the 5 viles cost over $30K).

After the infintile spasms were treated, what we were told might occur did, in fact, occur.  Not that his brain structure helped matters, but children often emerge with irreversible affects from the spasms.

That's the gist of the first 6 years of Logan's life.

More hospitalizations followed, more procedures, more treatments to try and more seizures than I thought were possible.

There were times that we simply couldn't believe that this was our life.  That we couldn't imagine that the suffering could get worse.  That we couldn't imagine that Logan's little body could take even more.  That we couldn't understand what we had done to deserve this.

I went through a time that brought sadness and often tears with each pregnant mama I saw.  Surely if I had the chance to do it again, I could do it better.

Surely if I had the chance to carry him again I wouldn't make whatever the mistake was that I made that caused this to happen to my sweet, innocent little boy.

Surely if I had the chance to do it again I would't let everyone down.

Surely if I had the chance to do it again, I would get it right this time.

I've had really high highs, when I could see God at work in every aspect of life.  And I've had pretty low lows, when I wasn't sure how I would face the next day.

And ours is just one story.

We created this foundation in Logan's name to make sure all of the struggles he has gone through and all that we have learned along the way is used to make a difference.  While Logan is in a good place now, we are not guaranteed this will last.  And while none of us are guaranteed tomorrow, the odds are stacked against Logan.  At least if you simply look at the medical side. Not only for the seizures to return, but they could be different...and worse. We could start the medication roulette game again. We could work our way back to over a hundred seizures a month.  And we also have to acknowledge Logan's increased risk of SUDEP (Sudden Unexplained Death in Epilepsy) because his seizures are uncontrolled.

Then there are the other families. The ones who have yet to be able to say that they are in a good place.  The ones who cannot yet say they have found something that works, even for a short time.  The ones who feel daily, sometimes every moment, like they have reached the end of the line.  Those who have found themselves with doctors who give them little to no hope of a better life for their loved ones.

The statistics say that about 30% of the people that struggle with Epilepsy will not find success with current  treatments.  This is the group Logan falls into. The saddest part of that statistic to me is that it hasn't changed years and years and years, despite the research and development.

And the treatments that we are seeing, at least from what I can find, are all seeking to treat the seizures.  We want something different.  We want to work from a new starting place. We want to look at why the seizures started in the first place. Find ways to stop this condition before it starts. And find new and innovative ways to offer a better qulaity of life for that 30% of the epilepsy population.

See, what happens is that so often poeple have experience with a controlled form of epilepsy. People know of somone who has it, but it doesn't greatly affect their lives. And that is wonderful. That means the research works.

That's what we want for Logan. So many of you have supported us for so long. And you continue to stand by us, support us and ask what you can do to help Logan.

We know for a fact that when we can get his seizures to a manageable level, somewhat controlled, then he grows. He changes, he learns and he comes to life.

When the seizures were controlled for those brief seven months on the diet, he learned to sit up.

Now that we are in a good place again, he is giving hugs. He is responding to us and he can consistently practice walking. He can make it to school more days than not and he can go horseback riding with his class.

Should the seizures decide to start up again, that all changes. He sleeps. He stops smiling. He stops living the life he should be living. And that changes the quality of life not only for him, but for his brother, too. Truly for everyone who knows him.

IT's a lot. It's a lot to type and it's a lot to take in, but it's the reality that we live in. Its the reality that thousands of families live in every day.

So why I am I sharing all of this with you?  Why does this matter?  Because you have so many options of where to share your time, energy and resources.  And I'm thankful that so many people are helping so many people.  I'm not here to tell you that epilepsy is the worst thing in the world.  I'm not here to compare conditions and tell you why ours is so much harder than others.

I'm here to share our story.  I'm here to fight for my little boy's quality of life...and ultimately his life.  I'm here to try to be a voice for many who may feel they don't have a voice.

We created this foundation and I have this friend. This friend named Diane. I don't remember a time in my life when I didn't know Diane. Our lives were intertwined throughout our childhood and although we went separate ways during college and beyond, the bond never changed.  We always laughed that we were living parallel lives in separate time zones.

So this friend Diane decides that the way she wants to celebrate her 40th birthday is to do something for someone else. Logan is the only name you'll see, but she is doing something for thousands of people that she will never meet. And she's doing it through our sweet boy.

I've been overwhelmed with emotion throughout Logan's life. It's another reason we need to share him with the world, even though every fiber of my being wants to tuck him under my wing and never let go. But he can make a difference. Through Logan people like Diane can begin to change the world. Through Logan each one of you who commits to your #40forLogan, who donates and who spreads the word, you starts to change the world, too.

I'm not naive. There are a million causes and a million families who are battling something. This is our battle, so we're going to fight it.

And this is our Logan.