Hello there,

This has been a long pause between entries, I know.  Thank you to those who have checked in with me to see what's 'up.'  It's been a chaotic couple of weeks - nothing having to do with Cody physically thankfully!  Just extraneous stuff I won't go into because it's very personal to us.

On to lighter topics:  Cody is on his 3rd week of Vimpat - and it seems to be reducing his seizures for the most part.  There are days he only has 1 small seizure a day!  Course there are other days that he has a 5 minute seizure and needs diastat like last weekend at Costco.  It's such a new drug, our neuro didn't even know what the 'upper' dose would be as they haven't tried it on enough kids yet.  Can you say Guinea Pig?  Luckily I don't see really any side effects so we're good so far.  We increase the dose every 2 weeks to see how he tolerates it.  If it really works, we pray we can reduce the number of meds he's on.  Every day I give him a spoonful covered in white pills - two times!  Zonegran, Lamictal, Clobazam, Vimpat.  Yikes. 

We met with our neurologist on the 5th.  He increased the 'magnet' setting on Cody's VNS because we feel like swiping the magnet at the beginning of a seizure may be helping. 

Other than that, there's just not that much to talk about anymore.  We are on our 15th drug.  We've done the VNS.  We've pretty much discussed every aspect of Cody's seizures front back and sideways.  So now it's kind of a 'check in' rather than a 'try to fix Cody' type of appt.  It's sad when that shift happens --- when sometime in your child's life the conversation changes from 'what to do next' to 'quality of life.'  It's called 'palliative' care which is a term I hate.  Basically it means there is no cure - and nothing more we can do - except try to improve his quality of life.  Yuck. 

But I will say that the Vimpat (so far) is doing just that.  It hasn't 'cured' the seizures, but it does seem to raise his seizure threshold enough that not as many break through in a day.  For us, that matters big.  And at this point in this journey, yes - we'll take an improvement in the quality of our lives. 

Cody has made some HUGE (make that GIGANTIC) strides in development lately.  He is now grabbing us by the hand and leading us all over the house - to show us what he wants.  Even a few months ago, if he wanted to sit on my lap in the chair he'd just stand in the middle of the room and scream, jump up and down, and wind up laying down on the floor on a pillow because he had no way to tell me what he needed.  But just yesterday, he walked up to me in the kitchen, grabbed me by the hand, pulled me into a whole other room, walked me over to the recliner, PUSHED me down into it, crawled up onto my lap and fell asleep on my shoulder!  MIRACLE! 

I call it our 'Helen Keller' moment.  Seems like he finally realized 'I need to communicate WITH people!'  We are so excited.  Another great stride is his understanding of pictures and receptive language.  It used to be the case that if we were going to go outside to get in the car, we'd take his hand and lead him toward the door and he'd just go ballistic because he didn't understand what was happening.  Now, if I show him his 'outside' picture (a photo of a green tree)...and I say 'outside!'...he just calmly walks to the front door and sits down to have his shoes put on.  Same thing with 'bath' - if I show him the photo of his bathtub and say 'Bath!'...he saunters in there without a fuss. 

To be frank, this is more communication than I thought he ever may be capable of.  I had high hopes for Cody using pictures to communicate, but I don't think I ever imagined his taking my hand and leading me somewhere.  I figured we'd just never get that far.  And we're 'that' far and he's only 5!!  So yay for Cody!!!

Casey is developing up a storm right alongside big brother.  He knows all his shapes, colors, and can count to 10.  He loves to learn!  And this little boy is a social butterfly.  His favorite times in life are when we have company and he can flit between people.  He is branching out from Veggie Tales to.........dare I say it?  Barney.  Ugh.  I'm not a huge fan, but Casey sure is!  Barney and Sesame Street have joined Veggie Tales as his big faves.  His favorite sentence is, 'I don't need help!'  He must do everything himself - pick out his clothes, put on his shoes, eat his food.  He is Mr. Independent.

As for Don and I.........we are............tired.  We've faced some challenges that have been heart breaking on many levels.  We have some big life changes occurring that weren't really by choice.  So we are trying to adjust and go with the flow. 

We thank you for checking in and covet your prayers.

Blessings to all, and to all a good night!

Shawna