Hello to all.  Well we're on day 5 of the pureed diet.  Not so easy.  I've become very creative - Whole Foods has a line of baby foods that is super interesting.  Cody especially likes Baby Borscht!  It has all kinds of funky ingredients - but it is at least a way to get something down him besides applesauce.  He isn't too averse to the diet, but I can tell he just doesn't like any of the foods so he's not eating much.  That I cannot afford.  I tried two different kinds of protein boosters, but both had elements of daily even tho they were lactose free.  Didn't agree with him. So I got a rice protein powder from Whole Foods yesterday that is dairy free and that didn't seem to be a problem.  I'm told rice is the only grain that doesn't cause gas!  So up until last night, Cody was up all night each night of the pureed diet.  Which is a real head-scratcher.  But the gastro dr. said it takes 2-3 weeks - not sure why.  Yesterday Cody just walked up to the table where Casey had left a bag of chips - and grabbed handfulls and stuffed them in his mouth!  It was so sad.  So I indulged him with a little soft bread and cashew butter.  Other than that I found "Ricera" which is rice yogurt at PCC.  And a coconut milk yogurt and ice cream.  He's also doing mashed sweet potatoes, squash, fruit sauces, baby foods, really soft avocadoes.  Stuff like that.  I can tell he wants different food that he's getting -but it's not a *huge* issue yet.  Last night was the first night that he slept thru the night and didn't toss and turn all night.  But (as I've been advised NOT to do) I have two things going on at once.  I started trying melatonin this week at the same time as the diet.  I figured it was a lark and wouldn't work because I've tried it in the past.  But I was getting desperate as the Clonadine was making him pretty manic in the day.  So I knew I needed a different sleeping option and I figured I'd try melatonin one more time.  To my SHOCK 2 mg's puts him to sleep within 20 minutes!  Only problem is he doesn't stay asleep - wakes up 4 hours later.  So I did some research and learned about time-release melatonin which I found yesterday.  It took him longer to fall asleep after the 2 mg dose (1 hour) but it seemed to help him sleep more deeply thru the night.  So I'm not sure if his night of decent sleep last night was from the time-release factor helping him sleep more deeply, or from the pureed diet.  That's the danger of doing two things at once.  I'll keep up both ends and see how it goes.  *IF* the melatonin keeps working, it will be a thrill.  I'd much rather use that than the high powered sleep meds we've resorted to.  Course everything has it's downsides and I'd rather not have to medicate him at all, but as we've seen, he (like most autistic kids) can stay up for days without sleep helps.  And that is murder on his seizures.

Speaking of which, his seizure load has been okay the last week - just some "mediums" as we call them.  A "medium" is 2 minutes or less and where he does not turn blue.  Weird to catagorize your son's seizures by whether he turns blue or not!  He's had some really good therapy days so that's going fine.  He's made up his own sign for TV which is really a milestone for him.  He loves having the TV on, even tho he's oblivious to what's on it.  He just likes the flashing pictures and sounds.  And if the TV is off, he runs over and thumps his chest with his right hand.  That's his sign for "TV on".  He's averaging 100 signs every 3 hours of therapy which is AMAZING!  This kid WANTS to communicate!!!

Still no word on what our respite waiver means for us, or when it will go into effect.  I filled out a ream of paperwork and sent it in. 

We enjoyed the beautiful day yesterday by going to the park - just both boys - and me!  I've never attempted that before, taking them to the park alone.  And I may never attempt it again!  Hahahaha.  Actually, it was fine for them.  Just crazy for me.  Cody mostly wanted to stay in the stroller and blow raspberries - but he got out twice and explored a bit and also went for a swing.  Casey is at least at the age now where he mostly obeys when I tell him to stay close to me.  So it's *almost* do-able to have them both loose at the same time.  Casey only wanders off a few times and is quickly told to COME HERE NOW which he readily obeys.  Casey is truly an obedient child.  I think there is a difference for him, than for most kids.....when he is told to "come here" there is probably a tone in my voice that goes beyond the normal "don't run away from mommy" and moves into "I CAN'T HAVE YOU AWAY FROM ME WHEN I HAVE CODY - DANGER!"  I try not to yell - only to say very specficially and directly "COME HERE NOW" and he instantly turns his head around and hightails it to me.  I'm so lucky that he's not a child that runs away at will - never to return unless chased.  And when he turns around and comes back to me after being beckoned, I jump up and down, smile and wave my hands, and make it a real party when he returns "YAY CASEY!  WHAT AN OBEDIENT BOY!  YOU DID AWESOME!!!  YOU CAME RIGHT BACK TO MOMMY!  YAY YAY YAY!"  By doing that I hope to make my serious command COME HERE NOW tempered by the fun it is when he obeys.  Kind of playing it by ear, but it's working.  I really need him to understand the gravity of his obedience because if Cody ever had a seizure - in the home or away - Casey really needs to drop everything and pay attention to me so I can make sure he's safe while I attend to Cody. 

And now the little guy is wanting breakfast so off I go!  Thanks for checking in.  Have a great Tuesday!

Shawna