The countdown is on!  We spent the day at Children's doing pre-op appts.  One with neurosurgery....one is with "anesthesia."  Yesterday we were at Children's for an evaluation by their neuropsychologist who evaluates Cody now and again in 18 months.  That's the bummer - this VNS can take a looooooong time to show any improvement. 

We're dropping Casey off at my friend Kim's tonight so Cody can have a peaceful day recovering tomorrow in a house that's not full of "gooo gah ba ba da da!"  Casey tends to walk around the whole house chanting his baby babble, opening every drawer, cupboard and pulling out it's contents.  I know what you're thinking - "why don't they have baby proofing so he can't open them?"  Um........there just hasn't been a spare second.  So I monitor him closely and I moved any dangerous stuff higher up.  So the drawers and cupboards he does get into are full of pot holders, spatulas, measuring spoons, etc.  I always know where he's been because there's a trail of items in his wake. 

It's so crazy, this life.  In order to go to my appts. at Children's I have to hire someone to stay with Casey and home and hire someone to come with me and help with Cody at the hospital because he's impossible to manage while at the same time trying to hear a word of what the Dr. is saying!  I have a support team the size of an army, I think!  Yesterday my friend Mike met us there - today it's Veronica and Shoshannah.  Tonight Kim.  As Hilary said, "it takes a village."  Haha.

I have to admit the appts. were very disconcerting.  They said the device will "protrude" from his chest.  It's implanted just under the skin, not the muscle.  It's about the size of a 50 cent piece and one other mom told me (on her child) it protrudes about 1/8" of an inch.  So it wouldn't show up in clothes - but you can certainly feel it.  And so can the child.  The nurse today told me the biggest risk in doing it in such a young child is that he'll pick at the wound site or the device itself because it sits up.  She said for a week he literally can't touch the sites.  Which I can't imagine.  I got soft arm restraints - but I can't keep him in them for a whole week!  I'm just not sure what to do.  Just pray.  He'll have stitches on his neck, his chest, and on his thigh from the muscle biopsy.  Three areas he can't touch.  Oy vay.  Luckily he will be on narcotics the first 24 hours which *hopefully* will keep him asleep.  One mom said her daugher was on morphine for 24 hours and oxycodone for 5 days after.  Course that brings up issues of constipation and vomiting. 

The surgery isn't until 11:15 which (of course) I (somewhat nicely) said "doesn't work for us."  They wouldn't change it.  So now Cody can't eat past 3am.  And the drugs he's on make him voracious all day.  The second he gets out of bed in the morning he walks over to his high chair and screams for food.  So I have a plan to wake him up at 2:30am and feed him (they said even that has to be a light bowl of oatmeal or something without protein or fat) - then try to get him back to sleep.  He will be a nightmare if he can't eat from when he wakes up till 11:15am. 

I left the hospital thinking, "should I cancel this?  will he be able to leave those wounds alone for a week and beyond?  can I live with a "device" (or as the nurse called it, a "box") protruding from his little skinny chest his whole life?!?  Then when we got home he had back to back horrible seizures - which oddly got me back on track.  If the VNS can reduce those, or if it can help us get him off some of his meds, this will be worth it.  I have to keep my eye on the prize - on the long term goal.  Short term pain, long term gain.  That's my pep talk.  Course when he's in surgery for 2 hours and they're cutting his soft creamy little skin open -- I may not care about the long term gain.  This is all so hard.  I wouldn't wish this on anyone.  And in the meantime Casey busts around in all his robust health - wanting mommy who is ensconced in Dr. appts, research, preparation, and taking care of Cody during and after his seizures.  But we press on -- what choice do we have?  I have lived at Children's this week.  Don is using his precious vacation days for medical procedures this whole year - either EEG's, surgeries, trips to see specialists.  These are our "vacations." 

Yet I always get perspective.  I had a friend of mine from high school die recently.  I hadn't seen him in ages but remember him fondly - we were very close in high school.  I looked at photos of him with his two daughters.  With his wife.  He is my age - 42.  Already gone.  It was a good wake up call that at least I'm here - able to enjoy my children.  Unlike him.  There is always so much to be grateful for when we look for it.  Cody is alive - and even with a "box" sticking out of his chest - he will still continue laughing, living, loving.  One appt. this week was an evaluation at Children's by a neuropsychologist.  All the questions were cerebral - "can he clap?"  "can he stack blocks?"  "can he talk?"  Then she hit me with one that caught me off guard....she said "what is the most important thing to know about Cody?"  I'm sure she was expecting me to say "he has horrible seizures" or "he never sleeps" or "he's extremely autistic."  Instead what came instantly and first to my mind was, "he's the most loving little boy.  He loves to hug, giggle, have back rubs.  He has a huge warmth and love for people."  And of course I bawled.  I just get so sick of labeling him according to his "level" of development. 

I recently bought him a medical ID bracelet online.  I looked and looked for one that didn't look "medical" - and found some "sporty" ones on one website.  I figure if he ever ran off somewhere - no one would know who he is or where he came from.  So an ID bracelet with his medical condition is long overdue.  I ordered one that has a sports band that says "faith" on it with a little fish.  And on the metal face they gave me 4 lines to have whatever I wanted engraved.  I knew his name had to go on there...and "epilepsy" and "autism"....then I pondered the 4th line.  I realized that he will wear this everywhere - that eyes will be naturally drawn to this little bracelet on his tiny wrist.  And as I played that scenario out I got sad that this amazing little boy will have a glaring sign on his wrist of all of his medical labels.  I hate that.  A 3 year old shouldn't have to wear a billboard that says Cody Graves:  "epilepsy" "autism".  What a crappy statement.  so for the 4th line, I had them engrave "LOVED."  At least there is something to add to the stupid medical labels - that defines who he IS - not what's wrong with him.  So next time you see Cody, he will have a way-cool sports bracelet that has a shiny metal front saying "Cody G.  Epilepsy.  Autism.  Loved."  And of course the flip side has our name and phone number.

I hope someday Cody will understand what that bracelet signifies.  That he'll look at me one day and say, "thanks for making sure people see all sides of me.  Thanks for showing the world I am more than my illnesses."  I hate labels.  I hate that our children who are so multi-faceted get pigeon holed as "on the spectrum" or "disabled" or "special needs."  They should have labels like "hero" "warrior" "miracle." 

On another note, I had a bright spot this week on Monday when I took Cody to the dentist!  He has these brown patches on all his teeth that were freaking me out.  I was sure it was some anti seizure medicine side effect...or that he bites so much that his teeth are crumbling.  I found out the little brown spots are from the iron supplement he started.  whew!  A little scaling and they're as good as new!

The Dentist said, "I was NOT expecting this." I thought, "oh no!!"  But I was thrilled to hear the next part...."usually with special needs children their teeth are full of plaque because the parents have so much else to deal with, the teeth come in last place.  But YOUR sons teeth are the cleanest I've seen!"  You'd have thought I'd won an Academy Award.  I said, "really?!?"  Don and I are pretty vigilant about brushing Cody's teeth and luckily Cody likes having them brushed.  And he gets very little sugar so I'm sure that helps.  But it's hysterical how much that made my day.  Being told "good job" by that dentist perked me up a bunch.  I can't control much - but dang it, my son's teeth are super dooper clean!

That's it for now - I'll update after surgery.  So many of you have written saying you're praying.  Even people who admit they don't pray!  So THANK you.  We feel your prayers.  Keep 'em coming!

with love,

Shawna