So far, NO good....

One of the scariest things about this whole PMG diagnosis is the seizures.  We were hoping (duh!) that we'd escape that aspect of PMG.  No such luck.  Now, even with medicine, they are unfortunately increasing.  Luke had two seizures over the weekend.  I say that with sad confidence even though we didn't witness either one. 

When we first brought him home, I was terrified.  Babies are so jerky and weird!!  EVERYTHING looked like a seizure to me.  There were a few dark weeks when Luke was going through a particularly jerky period where I had my camera out every two seconds trying to capture his 'seizure' on video.  I've said this in a previous post - we were told that we'd just know.  And there is so much truth to that.

After his first seizure we purchased a video monitor for our peace of mind.  We love it.  It's been super helpful.  Sunday morning I glanced at it after hearing some noises and saw that he was sitting up.  I went in to get him up and noticed that it smelled in his room.  Upon turning on the lights I discovered that he had thrown up.  So this is where I have realized my life has totally changed.  My mind instantly went to, 'Did he have a seizure??'  After his first two seizures he threw up.  So of course that's where I go.  I tell myself to stop being psycho, crazy mom (I tell myself that a lot these days) and that he probably has a stomach ache.  Toddlers get the stomach flu and right now, in our house, WE GET EVERYTHING. 

Dan and I got him cleaned up and watched him carefully throughout the morning.  And the gut instinct kicked in - he was super sleepy, pretty irritable and slightly off balance.  He fell asleep in the car about an hour and a half before his nap and then napped again that afternoon.  Not good.  We decide to play it cool - he's on new meds, we have to give it time, could be a reaction to the medicine....

We know one of us has to sleep in his room.  We also wrote down what happened just in case it started to happen more frequently.  If it happened again we were going to call the neurologist to get his take on the situation.  We are trying to keep track of any unusual behaviors/sleep patterns just in case the medicine isn't agreeing with him.

And then comes Sunday night.  This time we are both awake and I'm not in his room yet.  Video monitor is sitting beside Dan and we see it all occur - well not the seizure because unless you're looking at his sweet little eyes, you can't really tell.  Luke got sick and we flew up to his room.  He wasn't even able to lift his face out of it - saddest and scariest thing I've ever seen.  After we cleaned him up I was holding him and he was really lethargic.  He would look at us after we called his name several times.  He could stand on his own but only for a few seconds before he'd start to fall.  Gut instinct kicks in.  Again.  And for us it confirms both seizures at once.

We called the neuro on call at Children's.  Can I just say how very much I love Children's?  The neuro on call (I can't remember his name - I was a little stressed) was awesome.  He listened to what happened and said this fancy word that I am too tired to look up right now about post seizure behavior - we're going to refer to them as aftershocks.  Eventually we got him back down and I spent the night in his room and Dan spent the night listening to and watching the monitor.  Luke slept well...

Today Dan stayed home with Luke.  It was really hard to leave him but I've missed a ridiculous amount of work this year already and I knew he was being well taken care of.  Luke was pretty sleepy and definitely not himself this morning.  Two naps (on a normal day he only naps once) into the day and he was pretty much his old self.  Whew.

We spoke to our neurologist's office and they are upping his meds.  They said it might take awhile to find the right dosage.  I asked the nurse what we could do to figure out if he was having a seizure at night since he doesn't tend to move around during a seizure or make noises. 

"You're just going to have to watch him carefully."  Hmmm....goodbye sleep. 

And that is what we're doing right now.  We are on high alert and I'm trying to make sure I look at him closely every time he moves. We gave him the new dosage tonight and of course we are hoping that it is the magic fix.  We will see.

We are trying to figure out the right balance of trying to take care of one kid while not forgetting to take care of the other.  Last night while we were trying to clean Luke up, Ben was yelling for us from his room.  We finally let Ben get up and be with us because we wanted to make sure Luke was fully alert before we would let him go back to sleep.  Ben was full of hugs and kisses for all three of us.  He knew things weren't right.  The other night Luke was crying really hard for some reason before bedtime.  I was with Luke and Dan was with Ben.  Ben told Dan, "Daddy my eyes are wet because Lukie is crying."  He is so sweet (and wild, but that has nothing to do with this) and I hope we figure out a way as all of this passes to make sure he's getting his due attention, too. 

And we continue to take it one day at a time.  I hope and pray that the seizures don't hurt his development.  I hate, hate, hate giving him this medicine but know that at this point it is necessary.  It would be a lot easier if he could tell us how it was making him feel.  He does seem to be tolerating it well and doesn't seem to be having any ill effects minus the whole thing where it's not stopping his seizures yet.  Grrr.

Thanks in advance for all your prayers and positive thoughts for Luke and our family.  It means a lot to us.  Fingers crossed for an uneventful night and for the meds to kick in strong!! 

Lots of love.