I haven't posted in quite awhile - Cody's been off school 4 days this past week and things get quite - hectic - with him around all day! 

We saw Dr. Ranheim Monday - the DAN Dr. who specializes in biomedical autism approaches.  We've done about 1/2 of the testing so far and he gave me the results.  Very interesting stuff.  Cody had a blood test done to test for food sensitivities and now we're going to do a trial with those foods to see if the results bear out.  His hair test came up negative for heavy metals which is great.  Lots of other stuff was normal.  What was good news to me is that two of the gluten tests came up negative for gluten sensitivities - so if one more of the urine peptide tests is negative for gluten - there's no sense in doing the GF/CF diet acc. to him.  Whew.  I'd LOVE to dodge that bullett.  He encouraged me to feed Cody all fresh, whole foods - stay away from dyes, artifical colors and sweeteners - preservatives.  I do that pretty much anyway as much as I can.  Although I didn't realize how many things "red dye" is in!  Even in his calcium vitamins! 

His home ABA therapy is going great!  He's imitating putting balls in containers, blocks on top of surfaces, and now he's learning how to "bang" things in imitation.  He's working on puzzles, on turning pages of books, and on "functional play" which means pushing buttons to get toys to work.  It's all so exciting.  The very coolest thing he has going on developmentally is that we've transitioned him to a 'communication book' that he wears on a belt around his waist.  This book holds all his pictures.  So anytime he wants something, he can leaf through his book, grab that picture, and hand it to me!  At least that's the goal - right now we're just getting him used to the book itself dangling from his waist - and we're just velcro'ing 1 symbol on the outside of the book so he gets used to using the book instead of his old communication board.  He really is taking to it!  He doesn't fidget with it which was my fear.  This will be revoluationary for Cody - now when he wants something - he will have it right at his fingertips.  Inside the book are pictures of "beads" (his favorite toy is mardi gras beads), "bar" (favorite food is granola bar), "elephant jiggler" (mouth vibration device), "eat," "drink," "all done," "outside," and "water" (he loves baths,) and "noise" (for when he wants you to make a funny noise in his ear - which is pretty much all day, every day!) and "swing." Those are his most preferred items and activities.  It's so much fun watching him just reach down and tear a  picture off like he owns the world.  I can tell he feels empowered - now wherever he is he can ask for "drink" or "eat" - or whatever!  It's like carrying his words with him.  So that's our fun news on the "brain" front!

He's had a great bunch of seizure days the last few days...but boy was Wednesday ugly.  For no reason I could determine, he started having seizures at 2am and had 8 by 1:30pm.  They were starting to cluster - 3 within 20 minutes - and he'd had 2 rounds of diastat which weren't working.  The neuro said to give him 1 more round and that he'd be at Children's till 6 - so I hauled Cody into the ER.  So we went in - Cody and I - while I frantically called friends to come over and watch Casey.  Thank you Tori, Terri, and even the mom of one of my babysitters because her daughter couldn't make it!  And thanks Kim for being on stand-by!  Don left work and met us at the hospital.  Children's is so awesome - the neuro dept. had sent down a form to the front desk of the ER with all of Cody's particulars - they whisked us into a room - and before we knew it our beloved neuro was standing in front of us.  He said we could/should spend the night and have Cody on a drip of dilantin...but he also gave us the option of taking home a bigger dose of diastat and if he had 1 more seizure, bringing him back in.  Guess which one we picked!  Our neuro said he'd be pretty worried if Cody had 1 more seizure given that he'd had 3 doses of diastat so far.  Luckily we went home and haven't seen a big seizure since WEdnesday.  Dr. Saneto said it was probably just a flukey day - he said the ER had been full of neuro kids that day - it sometimes happens.  He gave us a larger dose of diastat to use from now on in those situations.  And while he was there he spent about 45 minutes chatting about Cody's condition.  I asked my usual "isn't there SOMETHING more we can do for him?"  He said there's a new drug being studied and trialed but it wouldn't be available for up to 1 year.  He said, you've tried all the big meds, he's not a brain surgery candidate, and you've tried the ketogenic diet.  All you really have left is more drugs, the VNS, or a corpus collosotomy.  He said he wouldn't do a corpus till we'd tried VNS - the corpus being cutting the motor strip that connects both halves of the brain.  It is a dramatic, radical surgery that is only for people with generalized seizures. It keeps the seizures (which starts on one side of the brain) from spreading to the other side.  So it wouldn't eliminate them, but it would (hopefully) make them shorter and/or less intense.  It's usually only done for people with drop seizures because they are so dangerous - but in a child like Cody whose seizures are so intense and frequent, it is an option - but not one you'd try unless everything else had failed.  So we discussed the VNS more and it looks like more and more of an option.  So if there's a 50% success rate, I asked, why didn't we do this sooner?  Children under 4 aren't supposed to have it done, he said, but in Cody's case we could make an exception.  So we're researching, praying, and deciding about the VNS.  It works in about 50% of the people who have it implanted. 

So there's my update.  Crazy.  I'm glad it's the weekend and we have daddy home!  It was a loooooooooooooooong week with Cody home every day and with our trip to the ER!  Happy memorial day to you all!  I know we'll enjoy it!

with love,

Shawna