So it's been a while....again. But I have time today, right now...thanks to the 10 minute Tonic Clonic (aka Grand Mal) seizure Logan just had and the 10 mg of Diastat I gave him.  Now we're just hanging out in his room as he naps and I monitor his breathing and help him turn over when he wants too (it's hard for him since he just had a brutal seizure and a dose of rectal Valium).

I don't mean to sound bitter, because I'm not bitter, but this is the vicious reality of Epilepsy and of one severe form of Epilepsy.  And in the middle of Epilepsy Awareness Month it seems more than fitting to give the nitty gritty details of my sweet boy instead of sugar coating anything.

The irony is that I was on the phone with my mom and we were both, very hesitantly saying how we felt like we were seeing improvements with him.  I think my concern about saying those things out loud had barely left my lips when this seizure started.

So here we sit, on this gorgeous day when the rest of our family and our friends and playing outside.  My baby sleeps.  He sleeps off a seizure and medication.

There's just nothing okay with that.

But enough about the bad stuff.  We have to live it...there's no reason to re-live it.

So, hold on tight or settle in or whatever you need to do because I have a lot to catch you up on.  Or if you have no interest, we'll catch you next time. :-}

I'll try my best to be as concise as possible.

Logan

We had our admission to the Pediatric Epilepsy Monitoring Unit at Jeff Gordon's Children's Hospital.  Great facility with awesome care.  It's a little overwhelming though when you push the button as a seizure starts and 3-4 nurses come in as someone responds over the intercom and they are all just waiting as you decribe what's happening to them.  It's what they do, but we are so used to being at home  when it happens that I had to think a little differently when trying to talk with them about it.

We were supposed to be there 3-5 days, but Logan showed pretty much all of his seizures in the first 24 hours.  We know that he has about 6-8 different types, so it was good to capture most of that on an EEG   and on video.

At that time we were also able to discuss what our next steps would be with our Epileptologist.

To catch you up quickly, we had another follow up appointment with the Epileptologist and this is where we stand.

~ We started and stopped Onfi over the summer.  We will not say that he failed this drug, but it did not seem to provide positive results at the time.
~ We started and have had at least 2 increases on Zonegran.  While we see some improvements, we are still a bit caustious in our optimism.  On this med we also have to watch for different side effects, some that are pretty undesirable.  The glorious waiting and multiple blood draws game. Yes, that is sarcasm you detect.
~ We are more seriously discussing the VNS (Vagal Nerve Stimulator).  I know of people who have these or who know of people who have these, who have seen positive results. However, right now it is a device that they would surgically implant into my son that would attach to a nerve in his neck and it
cannot be removed.  It would essentially zap him to help with his seizures and may or may not work. A very cynical approach I know, but I'm working on it.  It's just a big step. And it would probably be best for you to read about it at the link above since my description is probably not a fair assessment.
~ Our wonderful Dr. Bailey (the Epileptologist) presented Logan's case at a recurring conference of a group of the peds Neuro docs and at this time they have not ruled him out as a surgical candidate.  We're talking brain surgery here people.  Wow.  But the way it looks right now is that the surgery that would best fit is a corpus callosotomy, which essentially disconnects the left and right brain from each other.  The hope is that the seizures that Logan has that start in one place, but travel to his entire brain would have nowhere to go if you disconnected the two.  However this isn't always the outcome and things often become worse instead of better.  Sometimes though a positive side effect is that you are now able to isolate a specific area in the brain where either the majority of seizures originate or where the worst ones come from and now it may make sense to do another surgery on the brain to resect that portion to hopefully improve the patient's quality of life.  And this was just one part of the discussion at our appointment.  No wonder I have to keep coloring my hair!!

So, as far as the Epileptologist goes, this is where we stand.  Except for the fact that he is leaving at the end of January to go back to UVa.  I'm so not kidding.  As the Executive Director for the Epilepsy Foundation of NC put it, this will be a devastating loss for North Carolina.

We are entertaining the idea of traveling to Charlottesville to see him, but that is quite a haul with little in the way of advanced medical care along the way. No offense to all of the small towns between here and there.

So we are looking at a couple of different doctors - one at Duke and another at Wake Forest. We've got a couple of months until then, so I am confident it will all work itself out.

We also had our first Neuro Genetics appointment last week.  It was another WOW appointment.  I didn't really think much of it going in because I feel like what they tell us doesn't typically provide much in the way of care or actionable items for Logan.

Regarding genetics, they recently found a gene mutation in Logan and they were not sure what it meant.  Fred and I both gave blood to see if we carried that same gene mutation and wouldn't you know it, I'm the carrier.  I know, to those of you who know Fred I was shocked that it wasn't him as well. I'm sure he'll get quite a bit of mileage out of this though giving me grief.

So, there are more tests that they would like to run.  Blood from Logan for now and then we will follow up on those results in about another 4 months.

After we finished with the genetics portion and were waiting to see the neurologist, I was somewhat wondering what new info she could really provide since we have a neurologist we see regularly.  Let's just say that I continue to learn my lesson when I think I know everything.

The short of it - she completely explained Logan's MRI in a way that I could finally understand.  He has Polymicrogyria on the left side, which is a type of cortical dysplasia.  But he also has evidence of a cortical dysplasia on the right side, but at this time they are not calling it Polymicrogyria.  Those terms describe the structure of his brain.  The Epilepsy and Lennox Gastaut Syndrome describe the seizures.

But now we have new words in his chart to describe his developmental delays - Cerebral Palsy and At Risk for Intellectual Disability.

And while I can honestly, without shedding one tear, tell you that whatever label you put on Logan does not matter because we left with the same child that day that we arrived with, it is still a bit a of a calendar event.  I don't think you can hear something like that without it having some effect.

And while there are multiple reasons for making sure a child like Logan has those specific things in his chart, the fact remains that he would not receive all of these diagnoses if he did not meet the criteria for each one.

So, where do we go from here?

Basically everything remains pretty much the same for now until we reach a point that we need to make another decision.  That, in and of itself, is sometimes the most maddening part of things.  We can't just fix it and move on.

But we have to continue to focus on the good things. Everything that is a positive in Logan's life.

We have a FABULOUS nurse that provides the best care we have had for him!!  She is so good to him and so in tune with him.  I just wish she could be here 24/7 sometimes.

We have sweet, sweet smiles again.  And the best squeals at times!  We are convinced he is trying to talk.  He works so incredibly hard!!!  His whole little body gets all worked up just trying to get sounds out.  Any prayers that you want to throw out way on this subject...we'll take 'em!

This is just a brief sample!

And it feels like we are seeing more and more about Epilepsy Awareness.  I live in the middle of the disorder, but still, it feels like things are moving in the right direction.  After hearing, over and over again, the obscene amount of money spent during the presidential election process this year I am more motivated than ever to fight something that affects every part of life for my family.

We do have a huge praise.  If you have been following Logan at all you know that his left ear has been giving him trouble for almost 2 years now.  We FINALLY got an "all is clear" report from Dr. Parsons!!!  We are still the proud owners of our own otoscope, but I'm sure we can find a use for that down the road.

So that's the gist for Logan.  I've even left out a lot of what's been going on, but the big stuff over the last couple of months has been pretty big.

Despite what it may sound like from most of this post, there are 3 other people and a four legged little girl who also live here.

Mabel has been busy herself.  She had her little surgery and is recovering quite well, although Fred still seems to be taking it kind of hard.  He just can't believe we will not have any little Mabels running around.

He's completely nuts.

And she has developed quite the jumping skills to go along with the perfecting of the volume of her bark.  Just ask our nurse, Miss Kim.  Mabel barks and jumps at the back door to go out, then wants to come back in...all about the time Kim has gotten Logan to sleep.  Pretty much daily.  Geez!

Fred is doing well and staying as busy as ever.  But we have such a great Noosa family that it makes everything so rewarding!  The employees, customers, vendors, distributors, other PC companies....God knew what he was doing for sure when he led us down this path.  Thank goodness we listened!

And Freddie...he is more awesome every day!!!  He lost his first tooth about a week ago and acted as if it was no big deal at all when Fred pulled it out.  Me, on the other hand...I squealed!  Here's the video for that one.

He loves school, is learning to read, went on the first field trip of the year to the Lazy 5 Ranch, is a huge fan of his school and the football team, is extremely into trains (the real kind) and has the most precious brain that is growing by leaps and bounds.  He was already sweet, but he is becoming more than I could have ever imagined and we are beyond blessed that God trusted us enough to give us our sweet Freddie.

It is also becoming crystal clear that I'll be able to hold my own until about 3rd grade.  At that point I'll need tutoring...daily.

And as for me, I feel like I'm spinning most of the time...while I'm on the roller coaster.  But we are finding our way.

I was honored to speak at my first event for Epilepsy.  I was able to share a brief recap of our lives since Logan was diagnosed and was asked to share that story again at an event in Greensboro next weekend.  Nana and I are going together and plan to do a little shopping on the way home!  Maybe the thoughts of shopping the next day will settle my nerves at the event.

And we participated in this year's Fall Stroll for Epilepsy!  We have been so blown away by the support we receive from you guys, especially when it comes to that particular event.  Pat, from the Epilepsy Foundation is always pleasantly surprised as well.  From those who walk with us, to those who donate...you will never know just how much it means to us.

So that's the gist.  In one HUGE nutshell.  And it doesn't seem to slow down.

But we're making it.

Tonight, Fred and I have a night out at an event for Freddie's school.  That is yet another huge blessing.

So pray for Nana tonight.  She has both boys...and Mabel.

God bless you all...especially Nana!!!! :)