Hello there,

You know what I get SUCH satisfaction from?  Organizing a room in our house.  Ahhhhhhhhhhhhhhhhhhhh.  Feels so good.  And it so rarely happens.  One thing we talked about at my "mommy hero" lunch with other moms of seizure-kids is just giving up on housework.  Giving up on keeping photo albums up to date.  Heck, most of us have our kids baby pictures stored in our digital cameras -- still undeveloped!  Any realm of organization is a fantasty.  Keeping up on laundry?  Ha!  Bills??  Especially medical bills that require appeals, petitions for further coverage, and just trying to figure out what's what on each bill - impossible.  Cody's current stack of medical bills is a foot tall - no kidding.  Each bill is complex - we are on different programs with different providers because some of them (like Children's) offer assistance to those with "catastrophic" conditions.  Not a catagory I'd ever have wanted to fall into - but here we are.  Other bills - like the bills for all the biomedical work I'm having done on Cody by a DAN Dr - need to each be submitted by me separately.  So we take bloodwork at some lab - I pay up front and get the receipt - I have to send the receipt to insurance along with a petition for coverage (most of anything to do with autism isn't covered) - along with a Dr's note saying why it's necessary.  I send it with Don to work to fax.  I keep a file of "outstanding petitions".  I have to call insurance weekly to get updates on my appeals.  Exhausting.  Of late we're having Cody's hair, urine, stool and blood run through a battery of different tests to try to find allergies, toxins, yeast, metals, etc.  That's about 10 letters with 10 appeals with 10 Dr's notes....10 payments up front which you may never get back....and daily calls to insurance to follow through with it all. 

But back to my point - I organized a room last night until midnight!  Granted it was our laundry room that nobody sees.  But I see it.  And it drives me nuts!  There was stuff from front to back - old cables in bags - old modems - boxes of misc. items - spilled detergent - refrigerator water filters - you name it, it got stuck in this room for lack of a better place!  Sometimes when I'm overwhelmed with the more pressing stuff, I take a couple of hours and attack a room in "organization mode."  For moms like me who rarely leave their house - when the house is a mess or disorganized - my entire outlook is dismal.  When my house is clean, organized - I am THRILLED with life.  Why is that?  It is so rare that it's clean - much less de-cluttered - and last night was only 1 room (there are so many more!)  But at least it's something.  I used to say "my house will be clean when my kids turn 18" but that no longer applies since Cody will be with us long past his 18th birthday! 

I had to pick him up from school Friday - he had 3 bigger seizures in 2 hours there.  By bigger I mean :40 or 1:00 long.  Those are nowhere near as bad as the 2+ minute ones but he rarely has those.  When he has a bad day, it's the 1 minute'ish seizures we see several times.  Yesterday he had 5.  So hard - the screaming - the turning blue.  We are strongly considering the VNS - although surgery is about the last thing I feel like tackling.  VNS is a vagus nerve stimulator - a little kind of pacemaker that's implanted by the collarbone with wires that go up into the vagus nerve.  The pacemaker stimulates the wires which stimulate the nerve - I guess it's kind of a rhythmic thing you can set for every 3 minutes, 5 minutes or whatever.  They don't know exactly why, but it helps with seizures.  There are some nasty side effects.  A friend of mine's son has this and he has chronic hiccups - like the kind that interfere with life.  People get hoarse, coughs, sore throats, headaches.  Then there's the risk of infection and such.  I guess it works "some time" in "some patients" - I think the most recent stats are that it works in about 50% of epileptic cases and when it works, it reduces seizures up to 50% typically.  So for all this work, it only "reduces" by about 1/2 in a good scenario.  Sigh.  Is it worth it?  Once the stimulator is "in" your body it stays in for life.  If it doesn't work, they just turn it off.  And sometimes it takes up to 2 years to determine if it works!  Such a cruddy option.  I can't imagine in this day and age - with all our advances - seizures remain uncontrolled in so many children. 

What's particularly upsetting right now is that Cody's got what I call "blood freckles" all over his face after each seizure and they stay for days.  Broken capillaries from straining.  I asked Dr. Saneto about it and he said it's from the tonic portion of the seizures (tonic means stiffening.)  He's on lamictal (weaned the trileptol already) and he suggested using clobazam daily for a bit to see if we can get the intensity down.  More drugs. 

Okay - this has been quite depressing - so I'll stop writing.  How crazy is it to be jeaous of those kids who can have brain surgery as an option!  "yeah - if ONLY they could cut open my child's skull and remove part of his brain - THEN I'd be lucky!"  Good grief.  But it's such a solid option - one Cody is not a candidate for.  His seizures don't have a "focal point" that can be removed.  Darn it. 

But in the midst of all of this - I have a clean laundry room!  Hahaha.  I think the debate over VNS drove me to it.  "I need to NOT think for awhile" I told myself. 

What a BEAUTIFUL weekend here in the Northwest.  Can't complain about that!  Casey's cheek seems to be pretty much healed - one more good thing.  Cody got a new haircut - a "BUZZ" cut too!  I'll post a photo soon.  Lots to be grateful for - my cup of yummy warm coffee is a great way to start this day. 

All for now - love to you all,

shawna