Cody finally fell asleep off and on between 5am - 11am....but he had 2 big seizures in that time and tossed and turned non-stop.  So I'm not sure how well he slept.  I know I didn't sleep at all.  Don was up spradically with me thru the night because Cody was screaming so loud.

I will tell you - we are SO done with this craziness.  About 5 times during the night, when Cody was trying to sleep so hard, he would just sit up in bed and pound on the bed with his fists.  He was so exasperated.  Every so often all night he'd let out a HUGE amount of gas. And that was always precipatated by a big screaming fest.  I have NO idea why he'd have such enormously painful gas all the time.  He ate like a trooper yesterday and drank well - I thought he was on the mend.  Now it seems like he's spiraling down again. 

Now, at noon, he's still standing in the living room screaming in pain. 

Don and I are at our absolute wits end.  I've applied for respite with the state for 2 years and am told non-stop that there's a "waiting list."  It's to the point where I can't remember what i did 5 minutes ago.  This morning I got out of bed with Cody and had a splitting migraine.  I went to the kitchen to take my migraine medicine, and I can't remember what happened next.  I was sitting in the living room with Casey and I looked at Don and said, "did I just take a migraine pill?  Did you see me do it?"  He said....I don't know.  I saw you walk into the kitchen but then I was with Cody."  I am so sleep deprived and this life is so un-livable...I don't even know when or if I actually took medicine.  What if the pill is laying on a table or the floor?  Do I trust myself to dispense Cody's 15 meds a day?  I can't talk in complete sentences, I can't remember what I'm doing.  All of which I told the state - only to hear that I need to check with my insurance for respite care (dead end).  We've been applied for a "waiver" thru the state twice now.  And denied.  You give them all this dire info - plus notes from Cody's neurologist and other doctors testifying that our family is too sleep deprived to continue caring for Cody alone.  Our pastors wrote the state notes.  There couldn't BE more documention of the dire state of affairs.  And now we have the life-threatening diagnosis to boot.  And............nothing.  It astounds me.  You are left to languish on your own.  I won't go on about this topic.  Just had to vent. 

I gotta run - Cody needs lunch.  Thank you to those keeping track of us.  Your meals, prayers and hands-on help have kept us going.  I guess my new prayer request is that something would come through for respite care.  Our friends and family have pitched in so much.  But our need is so great that it will require more than our loved ones can meet.  I need another set of hands in this house consistently - perhaps even overnight or at least for a chunk of time in the day where I can sleep for at least a couple of hours.  I pray God moves the mountains of red tape involved in getting respite care - and creates a pathway for us.  All we want to do is take care of our child.  I know people getting respite care whose kids are totally functional!  But with all the budget cuts, there's been a freeze on respite for a few years now.  I know God's bigger than that - and I count on Him to make a way where there seems to be no way.

with love, shawna