Okay - to elaborate on Cody's weight gain:  We had him weighed yesterday at Children's and he now weighs 39 pounds!!!  I knew he was gaining because he just looks so much more robust - beefier - healthier.  Oh thank you, Lord.  The day I buy something that is a size 5, I think I will cry.  He's been stuck in a 3 or 4T for 2 years!  I went to the appt. to begin 'discussing' changing out his G-tube button because (as I have angrily posted before) we got stuck with a 'faulty' button from a 'faulty' batch.)  So since his surgery, we've spent 3 months taping it closed, mopping up stomach acid that leaks out (gross!), and making him wear a compression vest to keep the button closed.  It's been torture.  We had to wait 3 months for the 'pathway' to heal before we could change out the button.  So here I am at the hospital wanting to 'begin' the conversation.  Next thing I know the Nurse Practitioner is saying, 'Wanna do it now?'  My eyes got as big as saucers.  If you know me very well, you know I need LOTS of processing time before I make any decision.  And usually that processing involves lots of research, talking to other moms, going to online forums to read other people's experiences, prayer, etc.  But you know what?  I think I'm a-changing.  I looked at her and said, 'LET'S DO IT!'  So I decided on a Mickey button (for anyone outside of this 'world' that means nothing to you, I know.)  Basically the Mickey sticks out a bit further on Cody's stomach so it's a bit more risky that he'll pull it out - but it's way more stable than the Bard button was.  So they went out and got all decked out in their scrubs, face masks, and gloves - brought in a tray full of equipment - anesthetized him - and POP!  They pulled the G-tube right outa his tummy with blood gushing to and fro.  Can I tell you how tough I am getting?  I looked at the G-Tube that was pulled out, I looked at the gaping hole in my child's tummy that allowed me to see right through to his innards, I watched the nurse put silver nitrate on the granulation tissue surrounding the gaping hole, I watched more blood ooze, and I then watched her insert the new Mickey G-Tube and blow up the balloon inside his body to hold it in place!  Mind you, 3 months ago I almost threw up just doing his first feed.  I've come a long way, baby!  So voila, he was sent home with a new tummy tube and it is SOOO much better.  No more leaks, no more taping it closed, no more checking it 20 times a day to make sure it's closed.  And he's recovering quite nicely.  He is such a trooper.

And yes, he's gaining weight so all is working.  He's now on 1100 calories of Neocate formula a day via the tube and he eats about 100 calories orally in the form of applesauce and different veggie chips.  I'm still working out all the supplements as they need to be mostly done thru the tube and it's hard to get them that way.

Also, we got the car seat we petitioned for!  It's a Britax super plush special needs car seat.  It's gigantic, super padded with yummy velvety fabric.  It has big side head rests in case he has a seizure on the road.  And it will fit him for years to come.  Now we're trying to get an adapted trike through insurance and various other avenues.  It is exhausting going through all the hoops, forms, petitions and such to get these things - but he deserves them and they so improve our lives.

More good news - we moved Casey into his own room with his own bed!  That was a big transition for him and he was thrilled.  It's a 'veggie' room with blankets, pillows, books, stuffed Jr. Asparagus and Larry - just his cup of tea.  And on top of that, as we were putting him to bed, he shocked us by saying 'gotta poop!' and he stood in front of his little potty and pointed to it.  'Are you just stalling so you don't have to go to bed?'  "No!  Poop!' he said.  I looked at Don - he looked at me.  This was highly suspicious because we've tried to get Casey to use this mini potty for a few months now and he really doesn't like it.  But lo and behold, Don said 'we'll give it a try' and Casey proceeded to do his business!  We cheered, we gave him high 5's, we danced, we sang!  It really was a shock and was totally inititated by him alone!  Way to go, Mr. Casey!

Lots of nice news to report.  Course not the news we long for - that Cody is finally seizure free - sorry to say those are about the same.  But we take our good news where and when we can get it!  And we celebrate the heck out of it when it comes our way. 

We did get some heartbreaking news this week.  My dear Uncle Jay passed away.  He is missed, loved, and I'm sure he is in Heaven right now fishing with my dad.  They were buddies all through life sharing camping, fishing and hunting trips - riding tote gotes into the great wild - and I'm sure God has even greater adventures for the two of them to explore now that they're both Home.  It's we who are left behind who grieve, not them.  Losing my dad before Cody was born - was gut wrenching.  It left a hole a mile wide in our hearts.  Yet my dad loved the Lord and knew where he was going.  He has never been better....it is the people he left behind who suffer.  I try to remember that - and it helps.  Still, he and Uncle Jay died too soon.  They had much more life to live.  And it is our children's loss to never have known them.  Love you, Jay and dad!  

with love, Shawna