Thank you to the dozens of people who have checked in to make sure all is well with our family.  I took a break from blogging for awhile and was stunned that anyone noticed - let alone people I've never met from across the country who were so kind to let me know they missed hearing about Cody. Who knew?  I honestly had no idea the amount of people who pray for him, and care about him.  It's been very humbling.  Thank you for sticking with our family through thick and thin.  We still covet your prayers and I do hope that as I return to the blogosphere, that you will continue to stand alongside us. 

So here's the thing - as I alluded to in my last posts - something did happen to our family that knocked the wind out of us and that is the reason I stopped blogging.  Cody was mistreated - and put in harm's way - by someone we trusted and we just needed to hunker down and heal from it.  At this point it is in the past and we're moving on - but it was a hard time there for awhile.  Just a word to the wise, if you have a special needs child (especially one who is non-verbal) - I encourage you to get a Nanny-Cam and record what is going on in your absence.  Hopefully we all have great intuition, and the people we trust are deserving of that trust.  But let's be honest - sometimes a s.n. child can be really challenging.  And if I sometimes have a hard time keeping my temper - it only goes to follow that someone who doesn't have a mother's love for my child may lose their temper or be negligent toward him.  So from experience I tell you that there is no downside to having a nanny-cam.  If the person turns out to be totally trustworthy, at least you know.  If not, you need to know!  The law in Wa. state is that you can record video, but not audio if someone is in your home and does not know they are being taped.  Just and FYI.  From this point on, I am telling everyone who watches my kids that 'they are being recorded' and then you can record video and audio because they know you are doing it.  If the person balks at being recorded, then that's a red flag to me.  If someone is watching my kids, their attitude should be, 'go ahead and record me because I have nothing to hide.'  I just ordered the Nanny-Cam online - I got a digital clock with a camera hidden inside.  The clock recorded to an internal disc that I just put in my computer and downloaded all the video.  But now that I'm using cameras as 'preventative' rather than to 'catch' someone, I am getting two visible cameras (much cheaper!)

So enough about that.  I'm plannimg to resume my crazy blog so here we go!  Here's an update on our little lives right now.  Cody's new seizure drug, 'Vimpat' is still part of our lives.  It has been an interesting journey with this drug.  After a few months now, he is on 300 mg a day.  The results have varied.  For a long time the seizures were less frequent - but when they did come - they were more violent.  But this week they have become more frequent and smaller.  For instance today he's had about 25 short seizures (:15 or less).  So it's kind of hard to predict.  Overall, I do think Vimpat has helped.  I have to ask the Neuro if there's still room to go up on the dose.  I do not see any side effects which is rare in a seizure drug.  So unfortunately, Cody's seizures are alive and well.  And all the issues that plagued him before still do.

On the bright side, he is communicating up a storm and he's constantly dragging us around the house by the hand showing us what he wants.  His weight is still doing really well thanks to the G-tube.  The one area that has really spiraled down is his sleep for some reason.  He is up every night at 3am on the dot.  Without fail, he goes from a deep snoring sleep - to bolting upright and blowing a loud raspberry at exactly 3am....not 2:59...not 3:01...but 3am sharp.  It is the darndest thing.  It does not conicide with his medicine dosage, or hunger, or anything.  He's up from 3am - 4am.  And it takes me about 1/2 hour to fall asleep again.  Then Don gets up for the day at 4:45am and has to shower, shave, etc. which usually wakes me back up.  Then Cody gets up again by 6:30 or 7:30am again.  It's pretty crazy making.

Don's job is still going well.  My life is about the same - caring for both boys and trying to keep up with laundry, groceries, bills, etc.  Casey is still a marvel.  He is talking up a storm and his favorite pre-curser to any comment is 'Actually........' 

He wants to read SO bad and every sign on the street brings the question, 'what does that say?'  He recites the alphabet in his sleep - it is SO cute.  He got some rubber boots that have dinosaurs on them and he wears them every day, all day.  He's happy, healthy, and is so darn easy he could raise himself. 

Well that's it for now.  Duty calls.  Thanks once again for checking in - it means the world to us.

With love,

Shawna