Hi there!

Boy isn't it nice to have it lighter later?  I LOVE it! 

We've had some rough seizure days lately - wednesday Cody had a 6.5 minute seizure and a couple of 2.5 seizures yesterday and today.  Plus today he had about 10 minutes of clusters that look identical to his infantile spasm days.  He stood straight up - stared ahead - and every 10-15 seconds he'd grimace, tilt his head to one side, then pop out of it.  During "infantile spasms" days (his first year of life) this is exactly how his seizures manifested...up to 10 minutes of small "spasms".  I have no idea what's going on - nothing's changed at all.  Very weird, kind of scary.  We'd love your prayers about this. 

On the brighter side, we had some fun this week because Cody has learned to JUMP!  He jumps in the morning, he jumps in the afternoon, he jumps all day long!  He loves it!  His favorite way to jump is to stand in front of you holding onto you - and using you to hoist himself up in the air.  But he doesn't have to have that level of support - he was jumping on a play trampoline a few hops this week.  It's so fun.

I had a physical therapist who specializes in "neurodevelopment" look at his hands - which I'm convinced are beginning to stiffen.  I worry about his muscular issues with mito disease and he seems to be a bit more hunched over, a bit more rigid, and his hands always seem to be clenched.  She said it appears to her that it just may be behavioral - or a "choice" rather than his body experiencing actual spasticity.  I pray it's so.  We're working on trying to open his hands up and relax them whenever possible.  One more thing. 

But another fun accomplishment is that he's tackling a "color sort" program in ABA.  He totally has mastered "matching" objects, pictures, and even pictures to objects.  Now he really seems to grasp the idea of colors - and when given something "red" to put in a "red bowl" - he is right on the money!  It's interesting, his therapist and I were talking about how he really learns something quickly - and does have the cognitive ability to grasp concepts really rapidly.  But his sensory issues and fine motor impairments just bog him down so much, he never really gets to access what his brain can do.  does that make sense?  For instance, just to do the program with colors - he not only has to grasp the concept of matching color to color - he has to get past the fact that he can't stand or sit still....he has to get past the fact that his brain really can't control his hands very well so even if he knows (in his mind) what he wants to do - his hands don't follow.  So approaching any task is so frustrating for him because his mind has a plan, but his hands don't follow - and his body won't let him sit still long enough to execute the task!

All the more reason I ADORE him and his tenacity. 

I got the Lon Soloman book in the mail today.  He's the Pastor in D.C. I heard about who has a 12 year old daughter with mito disease and a parallel life to Cody.  I just started the book, and am already moved by some of the truth this pastor has learned along the way.  Surprise - he quotes Job early on.  "Though He slay me, yet will I hope in Him."  (job 13:15). 

Here is an exerpt from a portion called "brokenness is a non-negotiable"

Brokenness is not an optional experience for the person who desires God to use them in a mighty way.  Brokeness has been a critical part of the spiritual preparation for every man and owman whose life God has ever used.  To say it another way, you and I as followers of Christ, cannot and will not see God's anointing and power manifested through us until brokenness becomes a reality in our lives.  And the more broken we are, the more of God's anointing and power we will experience.  The portal through which we must pass to secure access to this power ist he portal of brokenness. 

When God wants to do an impossible task, He takes an impossible individual --- and crushes him.  Dr. Alan Redpath, the Making of a Man of God" 

Love, Shawna