Hello there - wow it's been awhile!  We have been up to our eyeballs in big, long, heinous seizures I'm sad to say.  Three of them in one week that clocked 6+ minutes.  I'm frantically calling all our nurses, gastro dr's and neuros at Children's to get advice.  I highly suspect the gas pain is causing the increase in seizures - yet nothing seems to stop it.  Cody's now on Neocate One Plus which is the consistency of water - but is hypoallergenic, dairy free, and amino acid based so it has no 'structured' proteins.  In other words, he won't even have to digest it.  That's the best baseline we can give him to try to discern what's what.  We're doing 2 weeks on this with no oral foods to see how his tummy pain is.  But I will tell you, this G-tube has endless issues.  The Neocate is so thin in consistency, it practically shoots out of his G-tube opening when it flaps open.  So we're playing with trying to keep his tummy less full which means more feeds per day.  Right now I feed him 6 ounces 7 times a day.  That is a LOT of our life revolving around feeding tubes and such!!!  But I'm hoping that less volume (6 oz. verses 8-10 ounces) will stay in his tummy more easily.  Right now when we vent him, liquid shoots up into the venting tube!  The other issue is that the Neocate has coconut and other oils in it, so it's too slippery to give via syringes.  So we're exploring using a 'gravity bag' which is basically an IV bag that send the food through the tube using gravity.  It takes much longer but is less of a hassle overall.  At least it will be but it's a huge learning curve.  Usually gravity bags are for long feeds but we need Cody's feeds to last under 5 minutes (the longest he will let us) so I've been jerry-rigging tubes, cutting them and pasting them together, to make the feed go more quickly.  On top of all that, the flap is defective on his button and now we have learned, so is the valve in his tummy!!!!  Oy vay!!!  A nurse today finally told me that everything I'm describing (stomach fluid shooting out, etc.) is telling us that the valve is not operating properly.  PLEASE!  You can see why I haven't written in awhile - literally every single second of my day revolves around feeding, figuring out feeding, tinkering with volumes of foods, calories, and now we're on our 4th formula in 1.5 months!  Not to mention all the big seizures and the all-nighters that are still common place.

Whew - that was all nice to get off my chest!  Hopefully it answers lots of the questions people have been nice enough to ask about specifics.  It is a struggle in every way right now.  I told Don I feel like a tea kettle that's at that point - right before it blows it's whistle.  Like I'm always about to explode but somehow holding it in.  Although there are many benefits to the G-tube, and I'm sure (I hope) it will get easier once we nail down a formula, it has been non-stop drama and seizures and sleepless nights since we got it.

Then there's the intense levels of communicating with his care providers who take a month off without telling me.  So I'm tossed to someone brand new who has no idea who Cody is and has to start from scratch.  Usually I feel our providers do a stellar job but I have to say that since the surgery it has felt like a very scattered level of support with no one really connecting the dots ultimately.  Perhaps because of summer and vacations taking people in and out of the mix. 

One bit of good news - the granulation tissue has gotten under control!  I used 'alum' which is a pickling spice of all things!  I read up on it on the internet - it is more of a home spun remedy.  I didn't want to get the tissue burned off so I cancelled that appt. in the hope of finding something more gentle.  Two days of alum (you make a paste and put it on with a Q-tip) and the gran. tissue is gone!  So I highly recommend it.  Now after each feed I clean the stoma and dab Aquafor on it with a Q-tip - then put a thin split piece of gauze on it and tape the gauze together.  Then I have to tape the tube flap closed as well.  So in addition to just plain feeding him 7 times a day, I have to re-dress the site every time too!  I feel like a surgeon with my surgical tape, scissors, creams, gauze....it's quite a production.

So there's all the nitty gritty details.  Poor little Casey has been so lost in the shuffle that I took him out today for Bubble Tea and he loved it.  Plus my sister's here for a visit with her 2 kids which is a nice distraction.  Cody's continuing his obsession with being outside (we LOVE it!) and we bought him a wagon which he and Casey adore.  He has worn out his trike and his little blue car!  I got a new 'push' car and pink was the only color they had in stock.  "we'll be getting a blue car in within the month' the salesman said.  'Honestly, I could care less' I answered.  At this point, my little Cody just needs thing to RIDE - and if it's a pink car - so be it!  I did not, however, apply the princess stickers and 'Barbie's Dream Car' licence plate!  Haha.  I so rarely get to Toys R Us, I wasn't about to let the guy talk me into having to return!  So our garage is now the proud owner of Cody's new pink car - which Casey will want to steal - and again I say - 'do I really care?'  I think not.  :)

Don and I went on a date Friday night which was nice.  We also rented 'Taken' which was SO good - a real suspense ride!  We're also burning through "Prison Break" on DVD - LOVE that show!  Don gets away to golf Saturday with a co-worker which will be nice for him.  Casey continues to be obsessed with Veggie Tales and "Dave and the Giant Pickle" is his current fave.  What's really cool is that helped us transition his interest to his kiddie Bible - we read page 40 about 100 times a day because that's the story about David and Goliath (in the veggie tale version, Goliath is a giant pickle....) Casey walks up to everyone he knows (or doesn't know) and points to his forehead, makes a sound effect like 'BAM!' - then crosses his eyes, and begins a dramatic prat fall forward to imitate Goliath getting hit in the head with a rock.  It is a STITCH.  How cool that he is so into a Bible story! 

So despite the craziness - we continue to try to find our moments. 

I am just so worried about Cody - things are so rough right now for him.  Please keep him in prayer, if you would.  His 7 minute seizure today at the OT center was heart breaking. 

Thanks so much for checking in - we are grateful!

with love,

shawna