Two Steps Forward, One Back, One Forward....

As I laid in the corner "bed" of Dude's hospital room last night, giving up on the idea of actually falling asleep, I let my mind wander to all the scenarios that could present themselves to us come morning. We knew the doctor would be in to update us on their findings for that 24 hour period of time and give recommendations for the remainder of our three day stay.

Dude and I had a fantastic first day. After we got settled, his Tourettes started to settle down.  It was at an all time high that morning, which was painful to watch.  Anxiety and the unknown exasperate the ticks.  We ordered tons of mediocre food since it was all free, we welcomed a freakishly large bear into our room, the nurses doted on our social butterfly, we built Legos, Mindcraft blocks, more Legos, read cards, books, watched the tube, ate our meals, opened presents from our amazing circle of generous and thoughtful friends and family, read books with Martha, the hospital book reading volunteer, and hit the sack.  He was amazing and I was so ridiculously proud of him.  

At midnight, I mentally rummaged through a few options that could arise in the morning.  The doctor could tell us that there was Absence Seizure activity during the day, which was what they (and we) suspected.  She could tell us that there was Rolandic Seizure activity during the night which they were not as convinced was happening (we were).  They could say he was experiencing both.  Or they could say they wanted to keep him longer to get more conclusive data.  She might tell us to go home if they had enough data. I was prepared for any of those scenarios.  Ready and emotionally armed.

Tim and his mom arrived to relieve me this morning, I scooped up Squirt from Grandma V in the lobby and headed south to drop her off at school.  Tim would call me after his consult with the doctor (the Epileptologist).  I walked through the morning, hot pink and black phone glued to my right palm.  At noon he called and said the following:

"The doctor found the same irregular spikes in his brain activity they saw in his first EEG.  However, there has been no seizure activity associated with the spikes.  She said that they absolutely would have seen Absence or Rolandic activity if he had either form and so they're concluding that dude does NOT have Epilepsy after all.  He falls within the percentage of children who show irregular EEG's but do not actually experience seizures.  The spells we see are likely a result of the Tourettes and ADD.  He does have irregular brain activity, but it's not something they treat and they're not concerned about it.  She told us we can go home and write this off."  

Silence.  Mouth agape.

Huh.

Really?

So....all these months and research and testing and money and planning and finding peace....

Huh.

Now what?  We rewind?  Where do we rewind back to?  I don't remember where we were before this presented itself.  This was our path.  This was our new normal.  We were okay with this new normal. This was going to provide answers and positive changes for him. This linked everything together. They TOLD us he had Epilepsy.  

So....he doesn't.

That's where we are in this moment.  The more we talk to each other, the more we conclude that NOT having Epilepsy is an amazing blessing. Of course it is.  We know that.  But that news spiraled us back into another loop that we didn't expect. It took away a sense of hope we had for completing part of his complex puzzle.  It made so much sense.  So much sense.  There was no doubt in our mind they knew what they were talking about. We saw, firsthand, every day, what they told us to look for. None of that was made up.  We told people with such confidence.  We told our son with such confidence.  We feel inside out and turned around and duped if that makes any sense.  So much money and time and energy was spent to put us right back where we started months ago.  That's one shoulder talking - spitting in my ear.

But he's not seizing.  His brain is complex and intricate, but it doesn't seize and cause him to lose himself day after day and night after night.  He won't need strong medication that could change him. We were terrified about that.  He won't need EEG after EEG to test the results of his meds and track the progress of the disease.  We won't have to wonder if he'll grow out of it or if he'll get his license at 16.  We won't have to watch him at night, looking for signs of seizure activity, wondering if his brain is allowing him to rest.  We can move on and focus on what he DOES need and eliminate this section of concern.  That's what my other shoulder whispers at me - or at least is starting to.

Parenting is a roller coaster no matter which way you spin it right?  Every day is magically different and unpredictable for every parent on this planet.  Some of our loops, like this one, are downright obnoxious and irritating.  Silly us for ever striving for or expecting anything less.  We'll learn something from it - like maybe to get second opinions from medical professionals who actually treat what you're investing your energy into.  Maybe that.  She says with just a hint of snark.          

    

 He did make a darn cute patient.  Our little mummy.