Hi there - we just finished giving Cody an enema (YUCK) and pray it will help him tonight.  His gastro Dr. says gas comes from two things: swallowed air, and a full colon.  He has long recommended a protocol of miralax, sennacot, and glycerin suppositories for Cody.  The goal being, to keep his colon clear at all times, not allowing for gas to build up.  I've tried the protocol several times but always "poop out" (hahahahaha) on about day 3 because it seems to make Cody's gas worse.  Well the nutritionist told that IS true, that miralax (laxative) and sennacot (colon muscle contraction stimulator) both can cause gas pain, but that if you stick with it, their bodies often get used to it and it cures the gas problem.  So after trying digestive enzymes for a few days hoping they would be the answer, we resorted to an enema tonight because that is supposedly a good litmus test as to whether the "protocol" approach will work.  In other words, if an enema helps Cody sleep thru the night, then the protocol (which would have the same effect - keeping his colon completely cleared) would do the same.  So we'll see.  I just hate putting poor Cody's little body through all that.  It's so sad - he just kind of braces himself and doesn't even blink when he gets an enema....it's so commonplace to him to have those types of invasions on his body. 

So (for those also battling these issues) - I tried digestive enzymes for 3 days - and will probably keep using them but didn't see any immediate relief.  They may take a bit longer to help...but I needed an immediate help tonight since he didn't sleep at all last night (and no naps today!)  He NEEDED to sleep and the enema seems our best chance.  I also am considering the garlic extract the nutritionist recommended but I read up on it and it also has gas as a side effect.  Jeeeeez!!  So all the "cures" for gas, CAUSE gas!  Oy vay.  I'm becoming WAY too much of an expert on pooping, gas, enemas, and colons! 

Cody had a tough day - raspberried all day.  Plus 4 bigger seizures than I've seen in awhile - no doubt from the lack of sleep.  After each seizure he'd fall asleep for 15-20 minutes then pop up.  He could not sustain sleep.  Tonight we gave him a clonadine to help get him to sleep but the jury's still out on whether it contributes to his craziness the next day.  Nevertheless, it's 10pm and he's asleep - so I best scoot into bed and try to sleep while he does. 

I'm glad today's over - no sleep last night - plus a root canal.  Yikes.  I did enjoy the laughing gas, but they didn't turn it up high enough.  I'm too much of a doormat to say, "um, a little more happy juice, folks!"  I'm afraid they'll think I'm a nitris oxide junkie.  Or just really wimpy.  I need to speak up more in those situations.  I pick strange times to wimp out...when other times I'll fight to the death for something!

So here's my latest search - therapy grants.  They have to be out there...for kids like Cody who need SO much therapy.  If you know anything, give me an email from this site, I'd love to hear it.  I searched around a bit and found Bill & Melinda Gates foundation but they (like most) only give grants to non-profit organizations. 

I'm waiting to hear from the state about my latest application for a respite waiver.  I'd love prayer on that one. 

That's about it from our camp.  We are all tired, worn out, and praying for a night of sleep tonight.  Course we've been praying for that for 2 years now!  Maybe I need to get a megaphone!  Haha. 

love, Shawna