Mickey.  Bear.  More.  Nemo.  No!  Tractor.  Love you.  Hi Daddy.  

These are the words I hear often from my favorite baby boy.  Now, he's not so much of a baby, but a thriving toddler just over 18 months old.  My lumpy bumpy adorable little man.  On our end, we say lots of things back to Grayson, like "Thank you for helping", "Where are mama's keys hiding today?", and my personal favorite "When did you learn to climb a ladder?"  The things we don't hear very much anymore these days are are "cranio"  or "antibiotic", "appointment" or the very dreaded "Bacitracin"  (magically transforming your baby's head of hair into an oil slicked penguin head since 1948!)

This summer has been nothing short of wonderful.  Last year, we enjoyed our summer but I also knew we were looking ahead to a surgery date, and in quiet times - those moments of stillness where you look out the car window, or down at your dinnerplate and find yourself in a momentary abyss of emotion and confusion - I worried. We were facing so much uncertainty.  Was Grayson in pain?  Would he look different after surgery?  What if he reacts to the anesthesia and something terrible happens? Will we all come out of this unscathed in the end?  At times, I almost treated it as our last summer - trying to soak up all the happy times before the clouds rolled in. In hindsight, I didn't need to worry so much.  But I suppose that's the way we prepare to be strong for what's to come, when you don't know quite what you're facing.  It was my mind's way of battening down the hatches, the way you wrap the end of your dog leash around your wrist just in case your hand gives way.

9 months post-op

My little tornado of energy and spunk has continued to grow and surprises us everyday with new developments.  We took him to the ocean and we learned we had a little fish on our hands.  He loved everything about the water, and we often had a hard time keeping him from jumping in on his own.  Josh even took him boogie-boarding, which scared me to death, but they both seemed to enjoy it.  A couple of weeks later we went to Disneyland, and our little cranio warrior was not scared of anything.  He held my hand a little tighter when our pirate ship plunged into the deep cold darkness, but he seemed to love every ride we took him on (including the Haunted Mansion where he actually growled at the scary ghosts), and he loved the impromptu street shows so much that he would cry when it was time for us to keep moving.

He has such an adventurous spirit.  I do wonder if going through so much at an early age has made him a bit tougher.  I'm grateful for everything God has given us, including his strength and his ability to have fun in nearly any situation (even if it backfires on me sometimes when we play the I-don't-want-to-change-my-diaper-right-now game).

As the plastic surgeon predicted, Grayson's screws and plates began to dissolve around 8-9 months post-op, and we could definitely tell things were happening in his head.  His temples got very pointy, and if he took a nap on his side (or fell asleep in the hiking carrier) he'd be a little red and swollen for awhile afterward.  You'd never know it unless you touched his head, but there was definitely a lot going on underneath the surface.  Thankfully, his plastic surgeon was also right about his head being nice and hard. Grayson likes to run everywhere at full speed, and he tripped on the grass and flew head-first into a metal drinking fountain at the park. Every cranio parent's worst nightmare.  I'm surprised the drinking fountain didn't have a dent, but Superman appeared to be just fine.  His incision has continued to flake and scab just a bit in places, which always makes us cringe a little with concern, but it appears the skin is just trying to heal itself over and over.  I'm super impressed by the incision the doctors made on his head.  It looks like they really took their time to do things right.  The zig-zag scar is nearly invisible, especially with all his hair.  The zigs and zags are very tiny, and unless you're looking for it, you'd never know there was a giant white lightning bolt stretching all the way across the little man's head.  Here are a couple of side views:

And here is the top of his head.  Like I mentioned before, his skull is beginning to shape itself back into somewhat of an elongated position.  I think he looks 'normal' and that this is okay.  I'm anxious to hear what the surgeons have to say at our one year checkup in a couple of months.  Look mom, no scar!

I've been thinking about having a "cranioversary" party for Grayson.  With a fancy-pants cake and everything.  A lot of moms do.  Cranio Care Bears even makes a t-shirt that says "It's my Cranioversary!" Of course, some parents are so glad to be over and done with the whole ordeal that they don't really want to think about it anymore, and having a skull surgery anniversary party feels morbid to them. Everyone heals differently.  For me, when I stay involved - when I make prayer chains for Cranio Care Bears for example - I feel like I'm giving a hug to a mom just like me - someone who feels scared, alone, and would give their right arm to take their child's place in the ICU.  Remembering is how I cope.  Celebrating Grayson's one year cranioversary is how I cope.  It turns a hard time into a time of happiness and joy.  And, as my friends and coworkers know, I'm someone who likes to celebrate everything.  I'm one of the most optimistic people you'll ever meet - I don't really see the point in being negative about things when you have a choice to make it better.  But I see a lot of carnage on the job as well, and I'm not naive enough to believe I'm guaranteed to live to be 100 years old.  And so I celebrate.  In this case, I want to remember our year of being strong, being a family, and loving each other so much it hurts.  I don't plan to do it every year (that might get weird) but I'd like to make this one special.  I'll keep you posted :)  

At 15 months old, Grayson is five months post-op.  He's changing every month and, in our biased opinion, only getting cuter.  He no longer has a perfectly round basketball-like shape to his head, but at the same time it's nowhere near the shape it was when he had trig.  The plastic surgeon said Grayson's forehead may always be just a tiny bit smaller than average, because he was a metopic kid.  We're watching it to make sure it's growing proportionally with the rest of his head, but so far it still looks great to us. In fact, the perfectly round head was a little weird, kind of like an orange on a toothpick (for you fellow Mike Meyers fans).


One side effect of the surgery is a much larger head!  Hats that were too big for him to wear previously are now much too small.  We generally have to buy a "youth" size, instead of toddler, or even an adult size and cinch the back all the way down.  According to growth charts, his head is now in the 75th percentile!

One thing we were concerned about since his surgery was his eyes.  His right eye, the one that experienced the most trauma during surgery (it wouldn't shut right after surgery and then a few weeks later almost shut completely) seemed to be a bit smaller than his left eye.  Especially when he was tired.  Josh also thought maybe the eye itself was having difficulties tracking.  Just to be sure we took him to see a pediatric opthamologist.  She was absolutely wonderful with him, and after a check-up assured us his vision was fine and what his eye was doing was a normal thing for toddlers, and something he should grow out of.

Around six months post-op, Grayson went back to Seattle Children's for a checkup.  Josh had the job of flying out and back with him this time, and without the infection in his head the flights were a much better experience for him.  The surgeons said he was looking great, and the bone was growing back appropriately.  The plastic surgeon said we should start to notice his hardware dissolving between now and a year post-op.  He said it's perfectly normal for certain parts of his head to swell up and get a bit lumpy as they're dissolving, and just to be prepared for that.  I don't care if he turns purple, I'm just so grateful he doesn't need any additional surgeries to remove hardware since they use lactic acid screws and plates now.  I've said this before, but I cannot say enough amazing things about Seattle Children's or our doctors there.  We've had nothing but great experiences at the cranio clinic there, and I wish every cranio kid had an opportunity to receive such quality care and compassion.

Ten weeks post-op.  Looking good!



Six weeks post-op



It's been awhile since I wrote.  Thought I should catch you up!  One month from Grayson's surgery, and subsequent infection, his bruising was officially gone.  So, although his incision was still a bit gnarly, and his swelling was still a bit pronounced, he has so much hair that a lot of people didn't notice anything was different at all about him.  He no longer looked like my little boxing champ. About this time, he unfortunately started to have issues with his incision again. Although the outer sutures were dissolving and coming off, his incision continued to break open and bleed in several places.  There was even one place that looked gray - almost bruised.  After just having been in the hospital again for the infection, we were super concerned about this.  Yes, the hospital toys are cool.  No, we do not want to play with them again.  So we called the cranio team at Seattle Children's Hospital, and they were incredible.  Instead of having us fly out again just to look at what we were seeing, they allowed me to send high resolution pictures to them over email.  They assured me that it wasn't infected again, and this was just a byproduct of his sutures dissolving and his skin trying to stretch to cover his new big-kid head.  We felt immensely better, and followed their instructions to break up the scabbing with peroxide before his bath each night, and keep his incision moisturized with vaseline so they don't come back.  Grayson does not appreciate this method, but he tolerates it if I let him play with the light switches while I apply the vaseline.  It's a bit challenging to hold a wriggling one year old and accurately apply grease to his head when the lights are turning on and off, on and off, but it makes me feel like Supermom when I get it right.

Six weeks after Grayson's surgery, Grayson's incision was looking great.  Josh took him the Christmas party at his daycare, and we got the obligatory "I'm terrified of Santa" picture to show his girlfriend someday. 

We are both so incredibly proud of him.  He runs and climbs all over the place, loves to laugh and play, and is starting to show his little personality more and more each day.  As you know, I had major reservations about someone changing the shape of his head.  Was it perfect? No. But it was his and I wanted to keep his little face just how it was.  But this new big-kid head is really beautiful too. Looking back at photographs now, I don't have a single doubt in my mind that this surgery was the right thing to do.  He still looks like our Grayson, but an even cuter version of our Grayson, which I didn't think was possible.  He's getting so good at walking around that he hardly ever comes within danger of bumping his head on anything.  We hover less, let him explore more, and I think he really loves the freedom. We did, however, take our wrought iron and glass dining set down to the basement.  I said we hover less, not worry less :)

Seven weeks after Grayson's surgery was his 1st birthday.  Grayson does not like to eat anything except cereal and crackers.  Have I mentioned this?  Mealtimes are interesting while we try to coax nutrition into him using every trick we know.  So, although we put an entire cake on his tray for him to destroy, this is how it went down.  He enjoyed the candle and the singing, then touched the icing, made an "ewww" face because it was gooey, and tried to throw it on the floor before wiping his hands off on the tray.  (Sigh)  We just laughed - that's our Grayson to a tee.  We gave him some Kix and he was happy.  Unfortunately, his incision isn't doing so well again.  It's bleeding all over, hard white sutures we've never seen are coming through the skin, and we're terrified that he is going to get another infection.  We called the cranio team in Seattle again, and sent pictures.  They said that although his outer-most sutures are gone, the inner sutures are now starting to dissolve.  Apparently, Grayson is having an adverse reaction to those sutures breaking down, and that's manifested itself in the bleeding, and the expulsion of the sutures.  They said this isn't supposed to happen, but sometimes it does.  I've gone through a whole bottle of peroxide, gently coaxing the scabs off each night in the bath. But it's now part of our bedtime routine every night again.  Lights on, lights off, lights on, lights off...



Christmas came a couple of weeks later (2 months post-op).  Confession:  I usually start listening to Christmas music in September.  I love everything about it.  When Josh and I moved to the Pacific Northwest, we started making a big deal out of going out to cut down our own Christmas tree.  It's the best feeling ever.  Another confession:  I didn't even approach the Christmas decorations in the basement this year.  We have no tree, we have no lights, we didn't even shop for gifts for each other.  If someone asked me how we were doing, I'd say with confidence that we're doing great!  But I just looked a bit closer, at things like the no-Christmas tree-Christmas, I suppose we are still just starting to exhale from running the cranio marathon earlier this year.  I can't really say that we're sad, I just feel as though we've modified our priorities for a bit.  We don't care much about the tree (although we will as soon as Grayson does), and we don't care about the gifts. We just want to spend time together.  It sounds so cliche, doesn't it?  But really, that's all we want.  To be together, just the three of us, doing the things we do.  BUT - "who am I to skip Christmas?" I realized at the last moment.  

So the night before Christmas Eve, we all checked into the Coeur D'Alene resort for the Santa Family Getaway Package.  The resort was spectacularly decorated with the most beautiful trees and lights, which Grayson adored.  We had cookies and milk delivered to our room by elves (we tried to give Grayson a cookie and he put it into the trash can...we are still having issues with the eating thing but we've got putting things away down.  So we ate them instead).  



And then, we all went on the Cruise to the North Pole to see Santa.  And guess what?  Grayson's name was read aloud on the "good list".  I videotaped it just in case he's not on the good list when he's 2 next year :)  It was the best decision we ever made, going away for the weekend.  We got exactly what we wanted - to spend time together, and we felt so recharged and happy.