Hi there.  Thank you to those of you who have shared that you are praying for Cody.  It means so much.  We were at Children's Hospital mon, tues. and wed. of last week.  By Wed. he had gained 4 ounces.  Sounds like a small amount, but at least we are heading in the right direction.  Wednesday we had his VNS turned back on after 1 week off.  Turning it off had no effect on anything.  Didn't lessen seizures, and he seemed as agitated and frenzied with the VNS off as he did with it on.  So we turned it back on because we still have a lot of room to tweak the different settings to try to help with seizure control.  It's probably an exercise in futility - but you do what you can. 

Seizures have been rotten.  Tuesday we had an appt. at Children's with a genetic opthamologist - an appt. which I've waited 3 months for.  Cody had a seizure in the waiting room - then passed out.  So I just turned around, put him back in the car, and drove home.  So exhausting to make that drive, wait in the waiting room for a half hour, only to pack him back up and head home. 

Today he has had a 1 minute seizure so far.  He's had a few rough nights too - no doubt because of all of the extra protein/calorie supplements I'm pumping into him.  They all give him gas.  That's the trade off, I guess.  No sleep (because of the supplements) but weight gain (because of the supplements.) 

But we press on.  Memorial Day will mark 4 full years that we've battled Cody's illness.  Four years ago he was a normal little 5 month old boy - smiling, cooing, reaching all of his milestones ahead of time.  It feels more like 40 years ago that all this happened.  Both my hair and Don's has gotten much more gray.  We have many more wrinkles (and they are not laugh lines...)  I'll never forget that fateful weekend on Memorial Day 2005.  We were all packed up and headed to Long Beach for a long weekend with Don's family.  But instead we landed in the hospital for a week.  I gave Cody his first bite of baby food in that hospital.  I held him as he had multiple EEG's and electrodes ripped out little patches of his hair.  I held him down as they did what seemed like endless blood draws.  We waited, watched, prayed - and then we left that hospital - after being told our perfectly normal son would slowly become retarded.  And so he has. 

But we're still married.  We're still fighting this fight together.  And now we have little Casey in the mix who - every day - is a ray of sunshine.  Our cherry blossom tree if blooming outside.  Don is out running 14 miles - training for the Seattle Rock-N-Roll Marathon this summer.  Casey is taking a nap and Cody is roaming the house blowing raspberries.  Life goes on.  Memorial Day will come and go once again.  And 1 more year will have gone by that Cody is ALIVE.  So instead of looking at this as 4 years of loss....we choose to look at it as 4 years of LIFE.  That's what gets us through the day.  His mercies are new every morning. 

with love,

Shawna