Hello everyone!  It's so nice to have people check in with me when I haven't posted in awhile.  Thank you.  I guess I've stayed away from posting to give myself time to chew on this diagnosis awhile, you know?  Sometimes there just aren't any words.

But I'm back at the keyboard finally and hoping you all have had a good week.  Since I last posted I had a root canal!  And 3 fillings filled!  And hey, the "Bachelor" (on ABC's reality show) goes to my dentist in Kirkland!  Now granted I don't have much time to watch TV, but I will admit to an occasional trip to ABC.com to see The Bachelor.  It is a sweet escape from reality for me!  So anyway, the Bachelor goes to my dentist!  How fun.  Apparently he had his teeth whitened before going on TV - go figure!  He actually seems like a decent guy too. 

It's been a really tough last couple of weeks sleep-wise.  Cody's up usually at least a few hours a night from gas pain.  I have him on an elimination diet right now - 4 days of just bland foods (rice, toast, applesauce, ritz crackers) in the hopes of getting a baseline for whether his gas pain is related to the foods he's eating....or whether it's simply that he can't digest *anything*.  So after 4 days of bland stuff, he's still sleeping horribly.  Last night he had 14 seizures overnight - we were both up all night.  So that tells me something - that he still has gas - even after removing all the foods I thought were potentially affecting him (nut butter, whole grain bread, hot dogs, bananas.)  It may just be the case that no matter what he eats, he just can't digest it properly.  I'm adding in one food a day all week - tomorrow is nut butter - to see if it changes his gastro profile at all.  If I determine his gas pain is non-food related - then that is a whole different direction to go in.  Then we have to start looking at motility issues, digestive enzymes, a couple of surgeries to take biopsies to look at colon function.  I was hoping it would be as simple as "ohhhhhhhhhhhhhhhh!  He's allergic to bananas!"  but I fear it won't be that easy. 

We've weaned him off topamax (thank heavens!) and have raised the clobazam by 1/4 pill a day.  I don't like what I'm seeing with the raised clobazam.  Lots more mania in the form of raspberries, not wanting to be touched, seemingly increased seizures.  So I think I may take the clobazam back down.  We tried clonadine for sleep but it seemed to really whack him out and make him ultra ultra hyper.  Now we're going back to benedryl once a night.  Oh how I"d love to have him sleep with  no aides, but it just won't happen.  I'm just so darn tired of meds and side effects!

So that's my mission for now - I pulled back on all his supplements and just had him on seizure meds and bland foods for 4 days.  Now we add in 1 thing per day and see how he reacts.  As all the docs say, "only change 1 thing at a time or you won't know what's causing what!" 

What else has gone on - it's Don's birthday today!  His mom and dad came up for the weekend and helped celebrate.  His beloved Pittsburgh Steelers gave him a wonderful birthday present!  I started a grief class through our church. Can I just tell you how much mojo it takes to get out of your car and walk into a grief class?!?  Who wants to do that!?!  But it was 10 amazing women - who are each rich, vulnerable, real, and honest.  Each one going through her own valley.  It was really poignant - sitting among other women who truly want the Lord's help healing the areas where they're experiencing grief.  Cody's new diagnosis was my reason for going - and when it came my turn to describe "why I was there" I just blubbered.  I can't even verbalize - which if you know me - is a rarity!  But as I said earlier in this post, sometimes there are no words.  How do you watch your 4 year old have seizure after seizure all night?  Just when he finally falls back asleep and I close my own eyes, he pops up in bed with eyes bolted open - arms and leggs stiffened - screaming and panting.  I hold him through it and he finally falls back asleep - only to do it again 15 minutes later.  It's so heartbreaking.  Sometimes he can sense when one's coming on and he opens his eyes - and I look his way - sensing something's changing - and he just gives me this little whimper before he stiffens as if to say "can't I just SLEEP?  can't you make this stop?" 

There is no worse moment in my life than when he's seizing.  And these all-nighters literally wipe me out physically but worse, emotionally.  It's just so unfair. He's just trying to sleep so his brain can repair from all the day's seizing - and even in his sleep he isn't free. 

So yes, I am attending the grief group.  and yes I continue to grieve.  And yes, I probably always will.  As our leader Kerry said, "life is full of loss.  the grieving won't truly end till we're in Heaven."  So don't be looking for an escape from it.  So the real question is....how to live WITH the grief.  How to live abundantely WITHIN the grief.  How to press on DESPITE the grief.  That is what I'll be exploring the next 7 weeks with these amazing gals.  I am priveliged to grieve alongside them.  I have great company in my tears!  And I believe, to the Lord, it is a beautiful thing to see his daughters sitting together...seeking Him...crying together...and sharing their very private pain.  Because what we're really grieving is this fallen world - where life hurts and life is hard.  And I know He grieves that as well. 

Our Pastor gave a great sermon today about loving Jesus.  He spoke about when you first fell in love - how you hung on your partner's every word.  They made your heart flutter.  Just being with them was bliss.  He talked about Jesus wanting that intimacy with us.  That is something I am searching for - and something only He can guide me to.  I have lived for 44 years (OUCH!) probably keeping him at arm's length.  Probably thinking of him more as "up there" and me "down here."  I know for certain I have not hidden in Him, I have not clung to Him, I have not longed for Him - especially not in this trial with Cody.  I want that to change. 

Below are some quotes that we were given at this class today that make my point better than I can:

"He makes my darkness His secret place."  Eugenia Price, "Getting through the night"

"No sorrow leaves us where it finds us.  It either drives us from God or brings us near to Him." JC Brumfield, "Comfort for Troubled Christians."

"Each stage of grief brings home the reality of the loss a bit deeper and more painfully."

"God doesn't say 'be still and know why....'  He says, 'be still and know that I am God.'"

"As believers, our good-byes are only for a season."

So there you go - kind of a depressing topic, I know.  Hence my not blogging for awhile!  :) 

all right - time for bed.  Blessings to you and hopes for a wonderful week to come.

with love,

Shawna