I am happy to say that it seems like Cody is back to himself today.  At least, about 80 or 90% there.  Yesterday we met with the nutritionist at Children's who works with mitochondrial patients and she was really informative.  She has a daughter with CF and is quite used to digestive issues.  She recommended aged garlic extract for gas (who knew?) and she also said she's seen some success with a combination of gas X and prevacid!  Weird!  I started giving Cody digestive enzymes two days ago and last night he did sleep thru the night....he did lots of tossing and turning and I could tell he was feeling the gas pain, but it seemed like it wasn't quite enough to wake him fully.  I *hope* we're on a good trend.  I'm giving him a dig. enzyme capsule with every meal - so we'll see how it goes.  I got more sleep than usual last night - although his tossing and turning is hard to sleep through.  But hey, I'm not complaining!

She said she sees these problems all the time with mito patients and it's usually not connected to any food in particular.  This severe gas pain is typically because part of the muscles in his digestive tract just don't function well, and the food isn't pushed through quite as quickly as a normal person.  So even though he has 2-3 bowel movements a day, he's probably not able to get everything out (gross, I know.)  So she suggested I also go back to the gastro dr's protocol of miralax (laxative), sennacot, and a glycerin suppository (staggering each every other day) to get him on a steadier routine of emptying his bowels.  I told her I've tried that protocol twice now but given up because I'm sure it makes the gas worse.  She said it often does.....at first.  And to give it 2 weeks because when the kids get used to it, it often helps.  So that's on my radar screen as well.  Lots of talking about POOP!  :)

She works closely with the mito team, and will be there the next time Cody has a VNS adjustment too.  I love the way Children's does a "team" approach to care for kids like Cody.  Everyone's on the same page - the nutritionist, gastro Dr, developmental pediatrician, neurologist, etc. 

I'm working like heck to also get respite somehow.  I have friends plugging away with state legislators.....I have others working within the state system....lots of folks are advocating for us.  I pray it goes somewhere.  Respite would make such a difference in my life - in our lives.  And the sad part is, we more than qualify for it.  But all the budgets are frozen and/or the waiting list is too long even if the budgets were frozen. 

So there you go.  That's my update for the day - thank you so much for checking in.

shawna