A couple of people have asked me to write about a "typical day in the life" of our family.  I think the last 24 hours has been pretty typical so here goes:

Saturday night to Monday morning:

Cody fell asleep at 8:30pm then got up at 2am with severe gas pain.  He was exhausted and tried to sleep from 2-6am, but couldn't.  I gave him activated charcoal.  I gave him a gas-X.  I rubbed his tummy.  I sang to him, prayed for him, listened to him scream and felt him toss and turn for 4 hours.  He finally gave up at 6am and just got out of bed.  So did I.  Don got up about an hour later and we talked about Cody's gastro issues.  We agreed to put him on a BRAT diet today (bananas, rice, applesauce and toast) to see if bland foods helped the gas at all.  Eventually I laid down to try to get some sleep and Don took over with both boys. 

Don took both boys to church, which I missed because I was trying to get some sleep.  I got up right as they left and spent the two hours they were away on my computer researching respite waivers, emailing other moms who have been granted respite care from the state....and ultimately writing to our state case worker that we are at the end of our rope. 

Don came home and dropped the boys off and then went to a sportsbar for a much deserved "man-time" watching his beloved Steelers game.  He just had a 2 week vacation and with the snow and Cody going crazy, he didn't even get so much as one moment of true "vacation time" for himself.  So today I wanted him to leave and take some time with his friends.  In the meantime, I fed both boys lunch, played with them...held Cody through seizures...did research on gas pain in mito disease kids.  I joined a forum of moms of mito kids and wrote a post about gas pain and what to do for it.  I gave baths, held through more seizures, read books, wore ear plugs to dampen the sound of Cody's constant raspberries...then made and fed both boys dinner. 

Don came home and helped put Casey to bed while I began our nightly ritual at 8pm.  Turn off all the lights, get Cody dressed for bed, give him his meds, and begin praying he'll fall asleep.  Tonight, on the advice of his gastro Dr...we gave him an enema before bed (not a lovely thing to do....) to try to clear his colon to prevent gas overnight.  We'll see if it works.  He was a MAD MAN all day blowing raspberries, screaming, bashing his head on the window.  And at 9pm, he's wide awake.  So we wait for the enema to work (which it does) - put Cody in his swing with a binkie and a vibrating pillow and I swing him....and swing him....and swing him....and swing him.  He gets out of the swing, then wants back in.  He wants a snack.  He blows raspberries.  He screams.  He swings.  He needs a new diaper.  He nearly breaks my nose bashing his head on mine. 

He finally fell asleep at 11pm and now embarked in the night upon a seizure cluster where he had a seizure every half hour all night.  Each half hour he awoke, sat upright with a start, and began lurching over into a 2 minute seizure.  One more night of no sleep for each of us. 

1/10 – put on brat diet for 3 days to see if it calms his tummy.  Only ate toast with fake butter, rice, banana, applesauce.    Up from midnight to 3am.  Up again at 6am.  Gave meds & fell back asleep with no problems till 11am.  Went to sleep at 8pm.  Pooped a ton today – including right before bed and at 2am.

1/11 – up at 2am – farted a few times – sure it’s gas.  Gave meds at 2am.  TRIED to sleep from 2-6am but only rolled non-stop.  No sleep.  Will try the brat diet without the butter spread.  Instead will use jam & toast.  No nap all day.  A couple of bigger seizures plus normal smaller ones.  enema before bed.  Had ½ dose of creatine in am – stopped in pm cuz horrible gas today.  Gave benedryl cuz he was a MANIAC.