To my surprise, Cody's VNS was turned on, on Thursday.  He healed so nicely they wanted to activate it - and did so with some magic magnetic thingie.  I got a big spiel about how it works.  They observed him for about 20 minutes to see if there were any averse reactions.  They said usually if it bugs a kid, you find out right away.  But Cody just sat there and hung out - no sign of irritation that this little round device implanted  in his chest was now stimulating his brain!  It's on a very very low circut - sending the stimulating impulses for 30 seconds every 5 minutes.  He lives with that for 2 weeks then we re-visit, share any side effects or change in his seizures - and they dial it up higher.  Then 2 more weeks, and it goes higher.  It will take about 4 months to even get it to the target setting.  And he's still having seizures.  But I will say this, he does seem more smiley since Thursday.  The last 2 days he's been a giggle-meister.  The nurse told me that the VNS is often used to treat depression in adults because it has been proven to help in that area.  She said sometimes kids become "brighter" as a result of the VNS...even if it doesn't help with seizures.  It could be a coincidence - we'll see if it lasts.  But for the couple of days it's been fun to see his big goofy crooked grin come out to play. 

He got an A+ for his wounds healing - the neck and leg are just little slits at this point.  His underarm is a bit more gory, a bit more Frankenstein looking.  But all are clean and never got infected which is the biggest fear in little kids.  I know another mom whose daughter had an implant at the same time - only to have it removed a couple of weeks later because of infection.  Now they have to let it heal and do the surgery all over again in 2 months!  I think I'd lose my mind over that!  So we try to focus on all the positives.  He's happy - he's healing - and no side effects to speak of so far.  He did get the hiccups twice today so we'll see if that persists.  Hiccups are one of the side effects listed - along with a persistent cough - a vibration to the voice - a sore throat.

I've had a lot of people email me about the VNS - considering it.  Lots have asked the cost - we just got the hospital statement and the entire surgery was $50,000.00.  No, that's not a typo.  And that's just for the day-of surgery (not even including anesthesia!)  That doesn't include the Dr. visits every 2 weeks afterward for 4 months+!  Insurance typically does cover it to some degree.  But it can be tricky because it's considered "elective" surgery.  I write the price because if you research, it lists $20,000 as a "typical" cost - but it is much greater.  If you are considering it, I wanted to save you time because it took me days to get a real figure rather than inaccurate info online.  But like all expenses with a sick child - traveling to see experts - medicines that aren't covered by insurance - leg braces - walkers - helmets - you weigh the pros and cons and decide if it's worth it.  I always ask myself the same question - "would I always wonder if it could have helped?"  That is a driving force in our decision making.  In retrospect, I will also say that it has (For us) been relatively easy in terms of the aftermath of the surgery.  Now leading up to the surgery I was sweating bullets.  But in reality, the wounds weren't gory, the first few days after surgery he mostly slept, and (luckily) he didn't fuss with the wound sites at all. 

I've also had many write asking about Cody's supplement schedule.  That also falls under the "would I always wonder if I didn't try this?" umbrella.  My life is ruled by this supplement/medicine schedule.  We worked it out with his D.A.N. Dr. (defeat autism now.)  I was skeptical about getting ALL this down him every day, but I made a numerical system and an excel list that sits on my cupboard and I just check off each thing as I give it to him.  He literally takes something every 2 hours.  Each one has to be timed a certain way.  The amino acids have to be given on an empty stomach with nothing else.  The probiotics can't be given with the nystatin (yeast fighter.)  The stipulations go on and on.  But I will tell you this, since starting this regime, his gastro issues have all but disappeared.  He used to toss and turn ALL night from the top of the bed to the bottom.  Now he sleeps like a rock most nights.  His gas is gone.  His rumbly tummy is gone.  So - it would seem - this is working for us.  Here's the crazy list:

So there you have it.  These were all added after a MASSIVE body work up - testing his hair, blood, urine and stool.  It is WORTH the effort to see him sleep so well finally.

He had a really nice day today.  I did ABA therapy with him this morning and them we took both boys to a friend's party.  Lots of people we love - who are so accepting and caring regarding Cody.  Casey was spirited away the minute we got there and given back when we left.  He is a charmer and people fight over him.  Cody was quite calm and happy in his stroller - occasionally coming out to walk around but mostly wanting to sit in his comfort zone and snack on bananas and hot dogs.  We rarely venture out with them and although it is a production, we are always glad when we do.

Below is a poem that came up on the forum for infantile spasms on yahoo that I am part of.  There is a link to it under "support information" on this site.  I like it.  Hope you do too!  Love, Shawna 

By Lori Hickman

Someone I love relies on me in ways you will never understand.
Someone I love endures pain and challenges that break my heart and
renew my spirit at the same time. Someone I love is unable to
advocate for themselves for things that most of us take for granted.
Someone I love will never have the opportunities that every child
should have. Someone I love will need unconditional love and support
after I am gone - this frightens me to the core. Someone I love
encounters pity, stereotypes, and prejudice at every turn,
because they look, act, and/or learn differently than others. Someone
I love has needs that require me to allow "outsiders" to have power
and input in areas that should be mine alone to meet. Someone I love
will continue to look to me for everything in life long after other
children are able to assume a place as part of the world. Someone I
love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs
of my own. Someone I love has needs that have become the driving
force behind major decisions my family makes. Someone I love has
changed me in ways I will never be able to describe. Someone I love
has taught me about love and about the really important things in
life...

(a few verses added by Shawna:)

Someone I love suffers through more in one day that most will in a lifetime.

Someone I love holds the key to the meaning of life.

Someone I love, although seemingly "broken" physically, is more "whole" than anyone I know.

Someone I love will one day no longer be clumsily walking, making gutteral grunts to communicate, and

lurching to the ground at the whim of a seizure. 

Rather,

he'll skip down the streets of Heaven - singing songs of joy - in a body that is finally perfect. 

He won't be driven to poke his eyes, to bite himself, to bang his head.  He will be free of the shackles of this

mortal body - his body will finally reflect his spirit - he will be shiny and new - whole and complete - lacking nothing. 

And there I will be -

skipping next to him - in perfect unison.  Able to look him deep in the eye instead of feeling him avert his gaze.

Able to hold his hand without it going limp in mine.  Able to hear his voice, for the very first time, and perhaps even to sing

with him.  We will sing songs of joy together and laugh - maybe even giggle hysterically - at this "former" life where

it was so hard.  That crazy world we lived in where life was so painful, and tears were so many.  It will be but a memory.

So it is with eternal eyes that we voyage on...

remembering the Heavenly perspective and what is to come.  This life is but a vapor - a mist.  We have

so much to look forward to.  And this gets us through the bad days.  It helps us press on. 

Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.  (Phil. 3:13)