His Ways Are Higher

 

Pie Face.

 

When I first heard about the game I thought it would be ridiculously fun to play with family.

I should have made my purchase before Thanksgiving though, because when I went to buy it, the stores were sold out.

 

Fortunately, our neighbors came through and saved us from much sadness when they gifted us the game!

Woohoo! Thanks, Griffis Family!

 

We sat down to play the Saturday before Christmas.  I wondered how my Gabby girl would do.

She has a tendency to experience sensory overload when input exceeds her limits.

 

Heck, it will probably be good therapy, I rationalized.

It will expose her to a different sensory experience in an entertaining way.

We proceeded with the game.

She found it hilarious when anyone else got creamed.

 

 

But when her turn came around, she looked petrified.

 

 

And when that whipped cream whooped her in the face,  she froze.  She was completely stunned.

 

 

She became very blinky.

This made logical sense given the large dollop of dairy that had just hit her face.

But the whole scene scared us.

It scared us because she had been a little blinky earlier that day.

It scared us because it reminded us of something we hadn’t had to deal with for 6 years.

It scared us because it brought us right back to the days when our child’s brain had been regularly assaulted with abnormal electrical activity.

It scared us because…seizures.

 

We cleaned her up.

We watched.

We waited.

We performed various neurological tests.

She was fine.

 

 

We moved forward and allowed that scary moment to move from consciousness to the back recesses of our minds.

We traveled north for Christmas.

We unwrapped gifts, ate lots of deliciousness, and enjoyed family.

 

 

 

Then we discovered Gabby on the couch blinking away as she watched morning cartoons.

She was responsive, she wasn’t losing consciousness, but she was undeniably experiencing some kind of seizure activity.

Here is what we saw:

 

I gave her an extra dose of Trileptal.

She had been weaned down over the last few years to only a 450mg dose daily.

The blinking continued.

She began to behave in a less reassuring manner.

Her face looked washed out and she wanted to sit on my lap and snuggle.

 

We gave her a .5 mg dose of Klonopin and waited.

After about one hour she turned a corner and was back to business as usual.

Well, except for some intermittent blinking you would notice upon closer examination.

 

We contacted her neurologist, Dr. Awesome.

He normally goes by the name Orrin Devinsky.

We hadn’t had any communication with this man in 6 years,

but when I reached out to him the Saturday after Christmas,

he responded 20 minutes later, via email, from South America.

Can you even believe that?!

This man’s commitment and dedication to his patients has blown me away on more than one occasion.

 

We were interested in getting Gabby evaluated by her doctors at NYU since we were already visiting the northeast.

They scheduled us for an appointment a few days later and the physician agreed that a video EEG would be helpful to get a better idea of what exactly was going on inside that pretty little head.

We were admitted to NYU for a two night stay.

We captured several of the blinking episodes while she was connected.

She always remained aware of her surroundings and was responsive.

The EEG showed nothing abnormal.

This was really good news because we ruled out subclinical seizure activity and the possibility of nocturnal seizures.

I guess the not-so-good news was that although the EEG is presently normal, we are definitely seeing evidence of seizures.

Seizures that occur in a localized area of the brain and don’t cause loss of consciousness are called simple partial seizures.

Simple partial seizures don’t always register on the scalp where the electrodes are glued.

Consider Gabby’s anatomy specifically.  Her right hemisphere is essentially gone and the vacant space has filled with cerebrospinal fluid.

Imagine the challenges in trying to accurately measure abnormal electrical activity that is occurring somewhere deep in the brain beneath that fluid.

 

 

The other good news is that Gabby has taken a very low dose of medication over the last several years.

In fact, when they drew labs to check her blood level, it was barely in the range of therapeutic.

This means that if we increase her Trileptal some, we may see this disconcerting blinking disappear as quickly as it appeared.

 

 

If I had it my way, I’d take these seizures away from Gabby forever.

But my ways are not His ways.  My thoughts are not His thoughts.

And just as the heavens are higher than the earth, so are His ways and His thoughts higher than my own. (Isaiah 55:8-9)

 

So I have to trust and believe that my God knows what He’s doing.

Seizures or no seizures.