Bugaloo and Pixie Too: i love someone who is rare

Months ago I promised you all I would write a little about Ollie's condition...yet every time I tried to sit down to write it I would get overwhelmed and walk away. Sometimes it is a little tough, emotionally, to write about, but more than that, I find it hard to edit myself. All the little parts and pieces that make up Ollie's medical history seem so important to me, but I know from a reader's perspective it might be really boring.
Anyway, since tomorrow is Rare Disease Day, I figured it's now or never! (And I promise, I'll try to keep it short and sweet!)

Ollie was born with a condition called Hemimegalencephaly (though he was not diagnosed until he was 2 years old). It is a neurological condition where one half of the brain is abnormally larger than the other. (Ollie has left HME). Typically, this condition causes intractable seizures which do not respond to medication and eventually necessitating a hemispherectomy, which involves the disconnecting or removal of the affected side of the brain. This condition is extremely rare. A few years ago I put this on Ollie's Facebook page to illustrate just how rare it is:

"The odds of having conjoined (siamese) twins is 1 in 200,000

The odds of being struck by lightning is 1 in 700,000

The odds of having a child with Hemimegalencephaly is 1 in 1,000,000.

But then, we always knew Ollie was one in a million. Even before the diagnosis."

Ollie's case is a rarity within the rare: his epilepsy actually is acceptably controlled by medication. This means that he does occasionally have breakthrough seizures (usually during an illness, when overtired or overheated, or during a growth spurt) but it is certainly nowhere near as bad as it could be (ie, hundreds of seizures daily...) I'm sure I don't need to tell you how incredibly lucky we feel about this!

The epilepsy is the scariest part of Ollie's condition. Over the years, I have gotten better at expecting and treating his seizures, but it never really gets easy. I have spent much of this flu season clenched up in a ball of panic, dreading the day a school illness finds its way into our home. There are other ways it has affected him, as well: He has delays in speech, fine and gross motor, and elsewhere. In many areas, he is developmentally delayed up to 2 years. He's in speech, physical, and occupational therapies, and at school, he has an aide to help him keep on-task. Things are just a little more challenging for Ollie.

Ollie gets poked and prodded a lot. Our life involves lots of doctor visits, lots of procedures, and a lot of fights with insurance. Here's a picture from his 48 hour EEG (which involved being hooked into a computer while sitting in that bed the entire time- he was incredible and didn't start to complain until about 36 hours in.)

Despite all of that, Ollie really is very much a normal kid. We don't know what to expect for the future. But in fact, we never have:

At one point, we weren't sure if he would walk. (He had a tiny little walker at one point, which was truly the cutest thing ever!) But then, at 28 months, he did start to walk on his own... And now he runs and jumps and climbs.

At one point, we were pretty set on the fact that he would never talk. We spent nights in sign language classes and days learning how to use speech assistive technology devices. But slowly, he started saying words, then stringing those words together into sentences. Now, he sometimes he gets in trouble in school for talking too much!

At one point, we feared that he would not be able to properly socialize. That he had no interest in other children. He was found to have "social deficiencies" and was tested for Autism. Eventually, though, he became interested in other children and now he adores his friends. He now actually scores above average in social categories.

Naturally, I have many fears for the future. I constantly have questions swirling around in my head: Will he be able to be independent? Go to college? Live on his own? Drive a car? The thing that I have learned about Ollie, though, is that you can never say: He won't be independent or he won't live on his own... because he has already proved to us that things we might have assumed he wasn't capable of just needed to be mastered in his own time.

There's a few other things you also might want to know about Ollie...

His smile is just about the greatest thing on the planet.