You know, I was thinking about my last post.  And I hope it didn't come across as preachy - or as if I am doing something "great" that you should do.  It comes more from a place of knowing that all parents of sick children are trying to do all they can - and here's one thing I've stumbled on and am giving a shot.  But I fully realize that life is so impossibly busy - especially when you have a seriously ill child - and if all we do is get something in their stomachs, get them to bed, and fall into bed ourselves...that's a mission accomplished!  Doing all the test that a DAN Dr. advises is expensive - and much is not covered by insurance.  So there's one caviat I didn't mention.  And they are incredibly time consuming.  I can't tell you the mornings I've put on urine baggies in Cody's diapers to collect "first morning urine" for 3 different tests - then run to the kitchen to freeze one, label the other, refrigerate the 3rd....then call FEX Ex to pick them up by noon.  Or the days I've had to collect stool samples (FUN!)  Or days like today when I drove to Lake Stevens at 8am after making Cody fast for 12 hours -- only to be kept waiting till 10am while he starves and screams before the blood draw is taken.  It's a ton of work.  And humping it over to Seattle to see a nutritionist once a month is no party either - altho she is covered by my insurance.  That to say...it's taken me 6 months to get all this testing done.  The DAN Dr. handed me the list and the instructions - and I left it all in a cupboard for 5 months before I had the mojo to take it out and start chipping away.  For 5 months it was just "one more thing."  But with summer here, and with school not taking up quite so much of my time, I decided to bring out the boxes and get all the testing done.  So I just wanted to say - that it's not easy - it's not cheap - and it's a big hassle.  So chew on that before you make any appts.  I got a lot of emails about the dr/nutritionist and I just wanted to throw that out there.  Will all my efforts and all this testing make a difference?  Who knows.  But as many of you moms probably agree - at least I can say I'm doing everything I can to help him.  Whether it works or not, that's up to God I suppose.

At the DAN Dr. office it was such a comedy of errors.  He treats tons of autistic kids so there was a waiting room full of them.  It was like a circus - each child doing his or her own version of quirky stuff dictated by their little autistic brains.  One girl - probably 11 - stood and chirped the whole time.  "Beep Beep.  Cheep Cheep."  A little boy just sat and groaned and held onto the garbage can.  He wasn't sick, just liked the garbage can.  Another little blonde boy sat perfectly rigid and still in his chair - head pointing straight forward - yet his eyes followed every move everyone made.  No doubt he was doing some savant math in his head while he watched the world go by.  And then there was Cody - obsessively running his fingers across every welcome matt in the office because they were kind of furry and textured.  Then he's climb on my lap and point to my mouth - requesting a noise to be made.  Then he'd flip backwards off my lap and go upside down...then rightside up...then upside down.  Oh my aching back.  Then he'd just sit and scream and slap his face.  Then he'd walk up to total strangers and hold their face in both of his hands and stare at them.  Or try to touch a dad's whiskers.  All of us moms just sat there and swapped eye rolls...as if to say..."can you BELIEVE this is our life?"  There were 2 kids getting blood draws before Cody and we heard screaming, weeping, wailing like you'd never believe for a half hour straight from one little boy.  His mom finally came back out with him looking pale as a sheet - as if she'd endured a concentration camp in that last half hour.  I looked at her and said, "well THAT sounded fun!  can't wait for OUR turn!"  She laughed - as did the whole office.  As I walked Cody in for his turn, I looked back over my shoulder at all the moms & dads in the office and simply said .... "good times!"  in my best Martha Stewart impersonation.  We all died laughing.  You gotta laugh.  It's what keeps you afloat.

I took Cody to a chiropractor today too - a GREAT place in Lake Stevens called Naturally Chiropractic.  They are fantastic with special needs kids.  I'm a big believer in chiropractic treatments - and used to take Cody ever week back when we lived in Vancouver.  But the last year it's slipped off my radar screen in the midst of all the busy other stuff we had going on.  But with the hit our kids nervous systems take with seizures - and meds - and body issues like low tone, flat feet, digestive issues - I thought it would be good to start things up again. 

On another note, Cody hasn't had a big seizure since Saturday.  whew.  I've noticed some interesting changes with the addition of the topamax.  He is now on 75 mg a day (sprinkle caps.)  And he's totally adjusted and is no longer dopey AT ALL - no zombie boy - in fact quite the opposite.  He seems happier, more alert, more connected.  He's doing great work at home in ABA and PECS.  He can be a little manic -- but that's really always been the case.  Topamax is sometimes used as an anti depressant so I wonder if that elevated his mood?  I'd love any feedback if your little one has done topamax.  I kind of don't mind it if this is what it's going to be like.  I was so fearful of the dopey side effect but that's gone.  Course he's still at a pretty low dose.  We see our neuro Monday and I have a lot of questions.  But hey - no trip to the ER this week so we're grateful! 

I just bought tickets to Women Of Faith on June 27/28 at the Key Arena.  I go every year and absolutely love it!  I'm taking my mom and Carol - a dear friend who comes over to clean my house every other week for a few hours.  I can't wait! 

And this weekend is Father's Day and in classic Don Graves style, he bought his own Father's Day gift, had it shipped to our house, and opened it yesterday and wore it today!  Haha.  He's so into running and he bought himself some fancy schmancy running watch.  I told him to wait till FD to open it but he just couldn't.  I wish I could send him on a golf vacation.  Or at least give him something that showed my gratitude for all he does.  Every night he pitches in the minute he walks thru the door.  He takes both boys while I make dinner.  After dinner we each take one and put his jammies on and put that one to bed.  Then he does the dishes while I clean the rest of the tornado struck house.  Then it's bed time.  Not too glamorous.  But I am lucky enough to have a husband who is truly a partner in this.  What a blessing. 

So much to be grateful for. 

With love,

Shawna