Hello there,

Long time no post - I know.  No real reason - except that seizures have been hopping.  Cody is on zonegran since the 14th.  This drug seems to have a pattern with us - for a week Cody has a 'honeymoon phase' where the seizures are just little tiny ones every day.  Then once he's used to it, the big seizures are back.  Every time we raise the dose, same thing.  It's great for a week, then everything goes haywire and the big seizures come back.  Weird.  But not uncommon. 

We did manage to get away with Casey for a bit to Deception Pass for a church outing.  Knowing Cody would hate it (bright sun, wind, no swings....) we left him at home with a trusty friend.  Although it still feels wrong to leave Cody behind - it is the right thing to do.  It's right for Casey, it's best for Cody, and it's good for Don and I to take breaks from the intensity of our dear Cody.  We are better parents to him because of the small breaks we are forcing ourselves to take.

Here are some photos of the day:

Here's Don and Casey on the Deception Pass bridge.

This is Cornet Bay where we landed.

And this is Casey's girlfriend Carolyn!  He insists she wait for him to get married - we'll see if she gets snatched up before he's 21!

That was last weekend.  Good to get fresh air and try to be normal.  Of course it had it's attending heartache - lots of 'normal' 4 year olds running around.  But I found it super comforting that a few members of our church's grief class were there.  A group of us women went through a grief book together for about 13 weeks.  We got very close and really broke through the artiface people can sometimes put up at church.  We have a bond.  And when I'd stand near one of them, they'd say 'how are you?' and I knew they really meant it - and were feeling my pain with me.  And that helped.  And I asked the same in return, guessing at some of the things they might be going through.  That is the beauty I find in the church body.  Your circumstances may not change - in fact they may get worse.  But if you allow it, there are those who come alongside you and carry you.  It's the Lord's fingerprints - He uses us crazy messed up humans to help each other heal.  And the weird thing is, these gals didn't 'do' anything.  Simply knowing they really *know* me helped.  Their thoughtful glances...their well placed pats on the shoulder...their follow up notes telling me it was good to see me out....it's nothing mystical.  It's just simply being real - and vulnerable - and sharing each other's burdens. 

This week has been luckily uneventful so far.  Cody's going to his regular chiropractic appointments which is something I'm glad to get back to.  He's been in his normal therapies.  The feedings are about the same - he's on the Neocate formula and just occasional snacks that he reaches for.  Still having bad gas overnight but I'm learning to medicate around it.  He gets up about once a night usually now for 1-1.5 hours.  It's still harrowing for me because it takes me about an hour to get back to sleep - but he's getting better sleep overall.  I can't believe it's almost September!  I am going to miss summer.  

Here is our little Cody bug - looking pensive as he chews on his elephant jiggler!  These little boys are more than I deserve.  I spent much of today just being happy for what I have.  And it's a lot.

That's it for now - thanks for checking in.  We love it.

Shawna