Hi all - it's been a packed few days.  We got our surgery date - June 26th - unless he loses too much weight before hand and we need to do an 'urgent admit.'  We go in tomorrow for the "Pass" clinic which is where we discuss anesthesia.  With mito disease, there are a few hoops to jump through - they can't be anesthesatized (I know that's wrong spelling but I'm tired...) with normal protocols because the most common types of anesthesia are mitochondria-robbers.  So we'll discuss that.  Plus Cody used to have airway problems because he had (get this title) 'mild laryngomalasia' (which means floppy larynx.)  So we need to do a lot to ensure safe surgery.  He can't have Tylenol because of the mito disease so we need to find a better pain med - usually codeine based for kids like him. 

We tried an antihistamine called 'periactin' because a friend of mine knew that it stimulates appetite as a side effect.  It has increased his appetite by about 1/3 - so lately he's been consuming about 1300 calories a day.  I'm anxious to get him weighed tomorrow to see if a week and a half of that increase in calories helped his weight at all. 

We had a scare yesterday when he had a seizure that sent him underwater in the bath-tub in the blink of an eye.  It's happened before.  He was only under for seconds but the seizure went on for at least 5 minutes - I'm sure more but you lose track of time at that point.  I wasn't quick enough to time it from the beginning because it was such a shock.  He recovered after a nap.  A friend of min with a daughter like Cody often talks about how the seizures actually traumatize her (the mom.)  I understand.  I think I die a little inside with every big seizure.  Casey is such a prince.  He has gotten to the point - that if Cody is seizing - he walks up to him unprompted - lays his little chubby hand on Cody's back - squeeze his eyes closed - and begins babbling a prayer for brother.  He's seen me do it so much - and I've invited him to join me so often - that it is just reflex to him now.  Today I was driving in the car with a friend and I looked in the rearview mirror and said, 'is Cody having a seizure?'  Upon hearing this, Casey (in the carseat next to Cody) reached his hand out toward Cody, squeezed his eyes closed, and began saying 'blah blee do dah....dee dah bleh do dah.  A.'  "A" is Casey's version of "Amen."  My heart broke watching him - yet I was so proud.  And also so grieved that this is a part of his daily life. 

Today Cody had a few bad ones as well.  So we're having a rough time right now.  He's had some funky symptoms.  Constipation, mania, bad seizures, and for the 2nd time now, he doesn't urinate overnight so he can go 16 hours before he goes.  Then suddenly it's an avalanche.  It's the weirdest thing - I don't know if he's with holding urine (sometimes a behavioral challenge) or if there's something mechanical going on.  I usually call the nurseline when he hasn't urinated in so long and they always say to bring him to the E.R. because he must be dehydrated - and then I tell them that he'd had a bunch of liquids that day - and they act stumped.  So I wait it out and inevitably a few hours later he pees through a diaper and whatever he's wearing because there's so much.  So many things go on with him - it's nearly impossible to sort through them.  Last night he was up from 12:30am until 5am.  I wanted to scream.  He was just wide awake.  So all that to say, something's definitely 'up' I'm just not sure what it is.

On a brighter note - we had some fun moments this weekend.  We barbequed on the deck again.  We took both boys to the park up the street saturday and ate Chinese food on the picnic tables.  Cody is getting more and more comfortable with the outdoors and will actually (on a good day) get out of his stroller and walk in the field of grass - sometimes even breaking into his goofy lanky drunken sailor run.  This park is perhaps the only place on earth right now where he can be totally free.  It has a grass field that is huge and Cody can just go run, grab the grass, spin around....and I don't have to worry constantly about whether he's going to fall or grab something dangerous or walk into a wall.  I would say without a doubt my favorite moments of this year are being with Cody in that field.  On a really good day he'll giggle and run up to me with his arms in the air and I pick him up and spin him around.  This type of activity has been a long journey.  He is aversive to wind, sun, grass - but over time we've built up his endurance and now he will give it a shot.  It has to be late in the day so the sun's not bright - around 5 or 6...but that's okay.  Casey runs with us sometimes - or checks out a passing doggie - or goes down the slide.  There was an unforgettable moment saturday when Don, Casey and I were sitting at the picnic table eating - with Cody in his stroller next to us.  He motioned that he wanted to get out, so we let him.  And for the first time ever, we didn't race to his side.  We kept eating.  And for about 10 minutes he wandered around the table - onto the basketball court - onto the grass - and he was okay all by himself.  It really was amazing.  Our lives are spent hovering inches away from him - in case of a seizure - and to just keep him from harming himself or wandering off.  So this was new and it didn't last long (he approached another picnic family and walked straight over their blanket with all it's food laid out.)  "Whoops - sorry!"  I said. 

But little by little - we pray for ways to allow him that independance. 

Oh to be able to collect more and more of these moments for him.  My prayer and hope is for his body to allow him to stop, look, and listen more often.  Those precious few moments when he is calm - are the most beautiful things I've ever seen.

Well that's it for now - love to all!  Shawna