Hello there.  Thought I'd share a coupla fun photos of fun in the sun.

Thursday we met with Cody's gastro Dr. at Children's.  He said that Cody needs a G-tube.  He's just not able to intake enough calories.  He explained it well - Cody has multiple seizures every day - most lasting 1-3 minutes.  Every one of those seizures burns hundreds of calories.  On top of that he is CONSTANT motion.  He never sits down, never stops moving....ever.  Again - burning hundreds of calories.  The Dr. said that no matter how hard I try, I will never be able to stuff enough calories into him orally to be enough.  On top of all that, the mitochondrial disease means his body instantly uses the calories he does eat to burn, because he has no energy reserves.  So there are no excess calories to put weight on him. 

He said something I'll never forget.  He said of all the mom's he's ever seen, he's never seen anyone who has tried as hard as I have - or been a dilligent as I have - to try to turn it around.  That gave me some peace.  I'd been agitated because of some of the comments I've gotten lately.  People have said things like "can't you just feed him stuff like pizza or mashed potatoes?"  I feel like saying, "oh yeah - thanks!  I hadn't thought of FEEDING him to get him to gain weight!"  DUH.  It's not about input.  It's that he needs more than he can ever intake even if he ate well (which he doesn't.)  It is SO beyond adding olive oil to his applesauce. 

The Dr. was quite urgent about things.  He had the surgery dept. call me the next morning to schedule things.  We go in Monday for the surgical consult and the surgery happens as soon as we can be fit in.  The Dr. wants us to weigh him tues. to make sure he's not losing more and if he is, they'll admit him immediately because he said he can't afford to lose any more weight.   

So there you go.  I haven't even processed this yet - cutting a hole in my little boys stomach and abdominal wall.  And putting a tube through it.  With Cody they'll do what's called a 'bard' button and they'll actually stitch the tube into the abdomen lining so he can't pull it out.  Yuck.  I can't even think about that part yet.  It's a 2-3 day hospital stay, then more recovery time at home.  He'll be fully functional after 2 weeks.  The tube will stick up a tiny bit off his stomach so we'll probably need to wrap an ace bandage around his tummy to keep it off limits long-term. 

The upside is that we'll be able to give him all his meds and supplements through the tube rather than orally which he'll be glad of.  The other upside is that the pressure will be off and he can eat if/when he wants - and I will supplement overnight whatever extra calories he needs that day.  He finally won't be skin and bones anymore - another plus.  We can have the tube removed if he ever is able to gain weight on his own again but they insist on leaving it in at least 6 months first. 

So that's the latest.  It will be Cody's 2nd surgery this year - his 4th hospitalization this year.  If anyone out there has any positives about the tube, please let me know.  I'm trying to embrace this as a positive, but it's hard.  I'll be praying right up until the surgery that we see some flukey miraculous weight gain that lets us hold off.  But I also understand that this has become dire - and we waited absolutely as long as we could. 

We also took Cody to get a pair of glasses today.  Lots going on for the little one.  I can't believe the technology of children's glasses - you can twist 'em, bend 'em, step on 'em and they go right back into shape!  He screamed and pitched a fit but we finally got them on his face and he left them on for 5 minutes.  I will be curious to see if we can pull this one off!  All you can do is try, right?  So we ordered a super cute pair of glasses for him so he can be a little Einstein.  He looked adorable. 

His resilience continues to amaze me.  And Casey grows more and more his teacher and helper by the day.  Every day Casey takes it upon himself to take a toy over to show Cody.  Or he goes and pats his head.  Or he sits in the swing across from Cody and gets right up in his face and says "HI!  HI!"  He looks so dejected when Cody doesn't even look his way and I'm always quick to say, "that's okay Casey.  Brother doesn't always look at you but he loves it when you talk to him!"  Very very occasionally Cody will look his way and smile during one of these exchanges and Casey jumps up and down and says "MAMA MAMA!!!  Brother!"  And I answer "YAY!  You made him smile!!!!!  AWESOME!"  They really are a match made in Heaven.  They bring out such good things in each other.

That's all for now - hope you are all having a wonderful weekend.

love, Shawna