"Autumn... the year's last, loveliest smile."

Fall, to me, is the most beautiful, bittersweet season and that is my favorite fall quote, attributed to William Cullen. I find it especially fitting for today because I'm writing to tell you about our year's last, loveliest smile. We journeyed back to Seattle Children's Hospital this past weekend to see Grayson's surgery team for his one-year post-op evaluation.  We hoped it would be the end of our cranio journey for now, and wanted to celebrate by making a family weekend out of it.  As I've said before, I'm one who never passes up an opportunity to celebrate.  It's been over six months since we've been back and although we couldn't be guaranteed good news, we were so happy and thankful for Grayson's recovery this past year and we sure weren't going to waste a weekend together running errands when we could be exploring!

We started out on Saturday morning and drove the first three and a half hours to the "Bavarian" town of Leavenworth.  They were celebrating Oktoberfest that weekend, so our timing was perfect.  This may be the last year we can dress Grayson as we please before he has an Opinion about it, so of course we took advantage of this and dressed him in his Uncle Charlie's authentic German lederhosen. He was quite a hit with everyone else who was dressed up that day, and I held Grayson as we danced and twirled together in the town square to an oompah band playing what I didn't realize was an old Bavarian traditional song... The Chicken Dance. Grayson is pretty lucky that our camera died at that point, because I wouldn't be able to stop myself from re-screening that spectacle to his future girlfriend someday - popcorn and all.  Grayson's favorite part about Leavenworth was practicing his new skill (jumping with both feet, off the curb) all over town.  I wanted to see what all the fuss was about.  I'll admit, it is quite the feat of balance and coordination when you think about it, it's no wonder he was so proud of himself.  At sunset, we followed a trail through Waterfront Park until it got chilly and then headed to our hotel for the evening, but not before we all splurged on our favorite drinks at Red Robin in Wenatchee - I had a chocolate shake, Josh had a Mac & Jack, and Grayson had a pediasure.  One of these days, that kid is going to eat real food and realize he's been missing out!

The next morning, we drove the remaining 150 miles to Seattle.  It really is eerie, and yet beautiful, when you cross over Snoqualmie Pass and the atmosphere changes. I can see why they filmed Twilight out here. We quite suddenly drove into what looked like a dense foggy area, with clouds so low you could touch them. We stopped in North Bend before we hit the city, so we could hike the Twin Falls trail.  It was a bit colder than we expected, and so Grayson wanted to cuddle more than he wanted to sit in the Kelty hiking carrier.  If this is a blog entry about things we're doing for the last time, I'm going to add hiking with Grayson in the Kelty.  Twenty-six pounds is about what I gained when I was pregnant with Grayson, but it sure feels a lot heavier when it's bouncing on your back and shoving cheerios in your mouth with wet fingers.  Once he warmed up a bit in my arms, he wanted to walk and I was more than happy to let him (helicopter mom as always lest he fall over the 150 foot cascade of water on one side of the trail).
Truthfully, my favorite part was when he wanted me to carry him in my arms as we walked along, because most of the time he's not a big cuddler. Even if it felt like hauling 3 gallons of milk in my arms up a muddy incline.  It was a snuggly 3 gallons of milk and it may be the last time I can carry him like that for so long!  Grayson's favorite part of the hike was jumping off every root, rock, and timber step with both feet at the same time.  He's really getting this down. Yes, it takes us four times longer to get anywhere. But his unbridled joy every time he lands squarely on two feet is worth the wait.

After reaching our hotel on Lake Washington, we took Grayson to the Seattle Children's Museum that evening, right before closing (I told you the hike took awhile...). It was getting pretty late, so we fed Grayson and decided to pick up a pizza on our way back to the hotel. Apparently, trying to find a Pizza Hut in Kirkland/Bellevue is like trying to find a Walmart in the Hamptons.  But our scavenger hunt led us right by a Trader Joe's and so by the time we got back to the hotel (an hour later) Josh and I had acquired a bottle of red wine to share as well.  We jumped on the bed, ate our pizza, and soon after, we all fell fast asleep.  It was my favorite night of the whole weekend for sure.

Our appointment the next day at Seattle Children's Hospital was wonderful.  Grayson wore his new shirt, and he was a total hit with his surgeons - they even took pictures!  While Grayson created abstract art on my hands and arms with a blue dry-erase marker, the doctors examined his head and said his bone grafts felt like they had taken well and were successful. His plastic surgeon explained that after reviewing his CT scans again, this was one area he was most interested to see heal, since there was so much "empty" space (bone grafting) on the top of his head right after surgery. Josh and I later talked about how it might be a blessing that Grayson hates food.  Since we supplement his steady diet of cereal and air with daily pediasure, he gets a pretty big dose of calcium and other vitamins everyday. The surgeons also said the big lumps in the middle of his forehead were normal, and will subside with time. The plastic surgeon explained that he needed to use a stronger plate right there in the middle, and so it takes longer to dissolve than the other hardware, which is why we're only seeing that reaction occur now, a whole year after surgery.  The plastic surgeon asked us if a professional cuts his hair, and if they notice his scar. I beamed and said truthfully, "no, nobody ever knows it's there" and although he didn't show it too much, I almost thought I saw a gleam in his eye as well.  It's obvious to me that Grayson's zig-zag scar from ear to ear was meticulously cut and sutured back together so that it would be nearly invisible.  The zigs and zags are so tiny and incredibly well done.
The surgeon didn't have to do it that way (it was probably more time consuming), but he did, and it really speaks highly of him.  I'm always taken aback by how kind, gentle, and personable both his plastic surgeon and neurosurgeon are, and how patient they are to explain things to us and answer all our questions. Talent and personality don't always go hand in hand, but they've got both in spades and we're so grateful they are in our lives. They have to be busy on clinic days, but we never feel rushed. On the way out, we saw Hector in the elevator and waved.  Hector can't know who we are, but he gave us a big smile and waved back.  Hector draws blood for the lab, and he once drew Grayson's blood when he was a baby without Grayson even noticing.  I don't know how they attract and retain talent at Seattle Children's but whatever they're doing, it works.

My one regret is that I didn't get a picture of G-man with his surgeons.  I was too shy to ask, because I didn't want to make them uncomfortable - not everyone wants to be photographed.  But I do regret it.  I'd like to show him that picture someday, and for him to know the kind faces of the people that we trusted with his life and his future, and that helped make him so gosh darn handsome :)  Grayson will be back in one year for a CT scan, so I'll work up the courage to ask them then. It's strange that I had the courage to hand over my first born son so they could cut open his skull a year ago, but I couldn't bring myself to ask them for a photograph.

Every now and then Grayson will say "Ow! Ow!" and smack his forehead.  I imagine the swelling bothers him sometimes, but those times are few and far between, and I know it's temporary. We'll have his "cranioversary" party on Saturday, and there will be 15 of his tiny friends there to help him celebrate.  He doesn't know why we're celebrating, and he won't eat the cake (I've already decided on a "chicks dig scars" theme with tractors and all), but I know he'll love running around with his friends and playing with his cars, trucks, and trains.  It makes us feel like we did something right to see him so happy - oblivious of his ear-to-ear scar, and probably to most of the memories of his recovery one year ago. And that's exactly how it should be.
We all jumped off the ledge with both feet last year.  Eyes shut, holding tight to each other's hands.  And here we find ourselves, on solid ground, standing squarely on both feet.  Looking back at the journey, Josh and I sometimes feel sadness.  We feel heartache that the person we love most in the world had to endure something so traumatic at such an early age.  And we also feel fleeting memories of fear - kind of like the fear you might feel when suddenly remembering a scary dream, before you remember it's not real.  We remember what it felt like to take that leap, and feel nothing but air beneath us.  But most of all... most of all we feel joy.
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.

"Hakuna Matata... what a wonderful phrase..."  And that was our theme song this week.  In case you don't speak Swahili (or you missed Timon and Pumbaa's wonderful rendition in 1994), it means "no worries."  As another cranio mom reflected in one of our prayer chain links - "Let go and let God."  I have no control over the fact that Grayson is back in the hospital.  I can't control how well his body responds to the medication, or even whether this will be the last time I have to write down which hands and feet were the last to have an IV so more can be put in.  I can only control how we deal with it, and let God do the rest.  I can make sure that Grayson smiles every single day.  I can coax a chuckle out of him after he's gone through a painful IV flush or I can hold him close and sing to him until he goes to sleep.  These are the things I can control.

A hospital is not a fun place for a baby.  It's not a fun place for anyone, really, unless you're me during the last phases of pregnancy (Hey, I got to lie in bed and watch movies, order grilled cheese sandwiches and chocolate pudding from the cafeteria and send Josh on late-night excursions to the maternity pantry for free rice krispy treats).  I digress.  The hospital is not a fun place for a baby.  They're bored, they learn that nurses = something bad is about to happen, and you can't explain things to them.  I'd love to be able to say things like, "This is temporary, we'll be home soon."  or "Don't worry, that blood pressure cuff is just going to give your arm a hug."  But I can't. 
Thankfully, hospitals have playrooms!  New and exciting toys to distract and occupy little minds.  Grayson LOVED the trucks they had in the playroom.  We even got to take some trains back to the room to play with later.  We also did a ton of reading.  I find myself reciting "Chugga Chugga Choo Choo" and "Barnyard Dance" in my sleep.
My mom, who has been an absolute miracle from Arizona for the last five weeks, also came to visit us all day.  Grandmas are magic.  They know all the tricks and can play peek-a-boo with the best of them.  My mom also gets the Cinderella award for helping me with playtime, feedings, laundry, chores, you name it.  She's an amazing woman.

Speaking of support.  I saw two angels from work yesterday.  They brought me coffee and breakfast from my favorite bakery, which was the best thing I had tasted in two days!  A third coworker called and offered to bring me food from my favorite cheeseburger joint.  A local cranio mom also brought us dinner and extra links for our prayer chain.  I haven't really cried throughout this process, but those acts of kindness were enough to get me pretty choked up.  We are so blessed to have such wonderful people take us into their lives.  I told Josh we need to pay it forward big time!  I see some volunteer work in our future :) 

Well, all those prayers must have really worked because after two days in the hospital, we got the all-clear to go home.  Josh and I were a bit nervous at first.  We called Seattle Children's and spoke with the cranio team to make sure they were okay with him going off the IV meds.  I don't mean to discount the hospital staff in Spokane whatsoever - we had the BEST care there, and truly we had the nicest nurses who went out of their way to make sure Grayson was comfortable and happy.  It's just that Grayson is kind of a collaborative masterpiece.  We want the surgeons who gave him his wonderful new head to be the ones calling the shots.  Since we've been home, we've had a bit of trouble getting G-man to keep his medicine down, but Josh has been hiding it in yogurt and distracting him with puppet shows.  We have a few follow-up appointments to make sure the infection is truly on the way out, but so far so good.

I'll never lie to Grayson.  If he wants to know how he got his scar, I'll tell him all about cranio.  If he wants to know why he has his scar, I'll tell him because God made him especially for us.  He wanted him to grow up strong, compassionate, and good.  He gave us all a test of our strength and our love for each other.  He knew we would be helped along in our journey by our loved ones and the kindness of strangers, and that we would all come out okay at the end.  Of course, I can't tell Grayson the story quite like that.  I think I'll need a brave knight named G the Gallant, who rides his noble steed (Toby) into battle against a fire-breathing cranio dragon.  But I'm sure he'll get the message.

Apparently, Grayson had an 11-month old birthday wish.  He wanted to go see the place that he was born, and he wanted to glow like his favorite toy, Glowy the seahorse.  So today we celebrated by going to the hospital and having a CT scan... well actually about 3 CT scans because despite the Versed, Grayson was wiggling around like the crazy person he is.  I'll back up...

Grayson woke up a few times last night.  By this morning, part of his incision was red, swollen, and leaking fluid and blood.  No bueno.  We called the cranio team at Seattle Children's and the on-call plastic surgeon said we should take him to the hospital.  So, at 6am I took him to the local ER.  They had absolutely no idea what metopic craniosynostosis was, and it took about 5 pokes to find his vein (which truly made me miss our friends on Whale 6 at SCH) but the staff was really nice and worked with the doctors in Seattle to come up with a plan.  Seattle Children's also called me several times to ask about Grayson and work out a solution, which made me feel totally at ease.  The local ER immediately put Grayson on antibiotics through his IV.  Seattle Children's preferred to evaluate him themselves, but because of the 300 mile journey, they said we should have a CT and some bloodwork done before they made the decision for him to come.  During the CT, I had to wait in the radiology waiting room.  It was my first time without him in 4 hours, and despite the crazy morning I had trying to entertain an 11 month old in a tiny room with the same 3 toys... I missed him.  I took advantage of the situation, however, and drank two cups of coffee in 5 minutes, along with whatever I could find crammed in my diaper bag.  Wow.  Burned my tongue but totally worth it.  Grayson, however, wasn't able to have any food until they determined whether he needed surgery or not.  I was finally able to give him a bottle at 1pm when the doctor came in and said, "No road trip!"  Grayson showed his appreciation by filling up his diaper.  Thanks buddy.  I have to say though, he went 7 hours without a bottle or a nap and he did remarkably well.  I am SO proud of him.  He really is an awesome kid.

So, Grayson will stay at the hospital for one or two nights while they give him antibiotics and watch his incision.  He already looks better to me, so I'm hoping we will get discharged tomorrow.  Neurosurgery at Seattle Children's wants to see him on Monday.  Here we go again!  Either we drive through the snowy mountain pass, or we fly for another $300-$350 a ticket.  But I have to say, he's worth it :)

Josh came to the hospital after work so I just came home to shower, get new supplies, and eat something other than a stale bag of cinnamon bagel chips (what's worse than day old plane snacks?  day old plane snacks in the hospital chased with 2 very awful cups of radiology waiting room coffee).

I'm taking Grayson's prayer chain from Cranio Care Bears back to the hospital to hang on his crib.  Lots of love to everyone who has supported us through this journey!  There's a better day around the corner, I can just feel it.

Grayson had surgery 18 days ago, and is looking better every day!  We get mixed reactions when we go out in public.  Some people do a double-take and angrily size me up to see if I look like the abusive type.  Some gasp and say, "Oh, what happened to you?"  And yet others are automatically supportive.  An older woman unexpectedly looked me right in the eyes, squeezed my hand and said softly, "It's all going to be alright."  I got a little teary as she walked away.  A tough biker looking guy at a restaurant said Grayson looked like a tough boxer, and he hoped his surgery went well.

Today, Grayson and I flew to Seattle to have his first post-op appointment with the neurosurgeon and craniofacial plastic surgeon.  What. a. day.  Grayson started the day out at 2:30am with a fever of almost 102.  Sheesh.  I woke him up again at 4:00am to head to the airport.  I'll let you guess how that went.  So, needless to say, I was "that person" on the plane to Seattle.  Flights with mad babies go something like this - People without kids try not to look totally annoyed, but deep inside are thinking "oh please don't sit next to me" and "where are my headphones, someone please tell me I packed the headphones" And I used to be one of them!  Shame on me.  People with kids, however, often give you sympathetic smiles, make goofy faces at your baby to cheer him up, and even offer to re-pack your diaper bag for you when you land.  Yes please to all of that.  Grayson was so tired after screaming (and I do mean screaming) the whole way to Seattle that he fell asleep in the Seattle Children's shuttle.  His snooze was short-lived, however, because we arrived at the hospital 15 minutes later when I woke him up again (*cringe*) and we checked in for our appointment.  Grayson screamed for another 30 minutes while we waited for the doctors.  He was so ridiculously upset, I was sure someone would walk in to see if we had been attacked by a T-Rex, but I guess a hysterical baby in a children's hospital really isn't anything but a soundtrack ;)

Grayson's appointment went well, and he's totally on track with his healing except he clearly had a fever again by this point.  And there was a spot on his incision that had been getting redder over the last couple of days.  By this afternoon, the redness had picked up like wildfire and spread to a large area around his incision and down around his ear.  It also became noticeably shiny, swollen and inflamed.  The surgeons thought it could be an infection (and it could explain the fever) which would not be a happy circumstance.  The appointment with the doctors was good timing in that respect.  The good news is, they prescribed him some Keflex.  The bad news is, they prescribed him some Keflex.  It's super powerful medicine, but has a tendency to make people queasy.  I'm pretty sure Grayson threw up whatever he ate for the last 3 days tonight.  It was totally gross, but also kind of impressive.  Somehow he even got it in his hair.  And ours.  Poor baby.  We'll try again tonight.

Grayson went to bed early but woke up two hours later.  After I rocked him back to sleep, I came out into the living room and noticed I had blood all over my shoulder. His stitches are bleeding.  Seriously?  What is going on?  We're keeping a very close eye on him.  What a Monday.  I suppose it wasn't all bad.  Grayson took a long cozy nap on our flight home this afternoon.  And someone helped me re-pack my diaper bag when the plane landed, after also giving me their aisle seat.  At that point, I couldn't help but think of my favorite line from Joe Versus The Volcano... "May you live to be 1000 years old sir."

Time for bed... I feel like it may be a long night.

Grayson has been home for one week now, and he's doing so great.  Our biggest complaint is that he's feeling so well, he doesn't know he's supposed to be taking it easy!  We're hovering over him like overprotective helicopters, following his every move as he gets used to the new size of his head.

His swelling has gone down a bit, and his bruising has gone up, but he's finally off the pain medicine today.  I think he was enjoying the extra tylenol for a couple of reasons - we think he's getting his incisors.  No front teeth in sight yet, but his CT scan confirmed that a few other teeth might be pretty imminent.

Today is also his last day of Bacitracin ointment.  Woo hoo!  Although my chin, neck, and face are truly very moisturized and soft from him snuggling his gooey little head into me every night, I think we are all excited to be done with that stuff.  Poor Grayson.  He looks like a baby bird in an oil spill.  I wish I could wash his head with Dawn so he could stop looking like Ponyboy from The Outsiders, but I hear that in a few days his hair will finally start rejecting the shampoo and he'll be back to normal.

Grayson is enjoying all the love, support, and of course presents that people have so generously and thoughtfully sent!  The first thing he does when he gets a new toy is to snuggle it.  The second thing he does is bite it.  Boys.  He went absolutely off the deep end when he got his new car this weekend from Grandma Kitty.  Such a happy kid.  And already breaking the law.  "Hello, Grandma?  I'm driving!  Can I have a banana?"

Home, and happy!
Today is Sunday, October 28 and G-man must have had a lot of prayers today because it is such a great day.  He's been so active - he tells me when he's awake by standing up in the crib and jumping up and down. The neurosurgery team came in at 9am and said his JP (drain tube) could finally come out!  That was not a pleasant experience for Grayson, but they said he shouldn't have really felt pain just discomfort.  We are SO happy to have that out!

The big news is that Grayson is going home early!  He was doing so well that they said they could discharge him today.  We were shocked but very happy.  It's hard for these kiddos to really get good sleep when they share rooms.  Inevitably, babies are babies, and they're not going to get cranky, have medicine, and the all-dreaded vitals at the same time.  So they're constantly waking each other up!  Seattle Children's is building a new wing, and one of the features is that kids will have their own rooms, which would be awesome for them.  Aside from that, though, Gray's experience at Seattle Children's has been so great.  Everyone took such good care of him.  It's a great hospital for parents too.  The cafeteria is so cheap, there are nice calm outdoor areas everywhere, there are 2 Starbucks stores, and also a big resource area for parents where you can do laundry, shower, get coffee, read, get on the computer, or even sign up for a massage (I didn't get to do this, but it sounds awesome).

Time to pack up and get on the road!
Grayson got to see another therapy volunteer!  A guy with a guitar came in to see us, just when G started having a rough day.  He played some really nice music, and we got to request Twinkle Twinkle Little Star which made Grayson happy.  Grayson kept reaching for the guitar, so the volunteer let him hold it while he played.  It was the Grayson remix :)  What a nice thing that this guy spends his Saturday afternoons helping kids have a better day.

Saturday night, Grayson got his last lead taken out.  No more wires!  I'll admit, it had been kind of fun to see his heart rate change depending on his activities.  I could tell when he was truly asleep or about to wake up.  And when he watched Baby Einstein on the iPad, he nearly flatlined.  It was hilarious.  It's his zen place.  We suspected as much.  He still has his JP in, but we safety pinned the bulb to his gown.  We finally got to take him down the hall for a walk, which he loved.  He traveled with his favorite music (Iz) on the phone.  I can also comfort him and put him back to sleep at night without being tethered to the wall!  We let him play on a blanket for awhile, and he seemed to be so happy finally being able to crawl around.
On Friday, around 24 hours post-op, Grayson really started to perk up.  He was able to sit up by himself, and he had his first moments of being awake without crying.  That was a really great milestone for everybody.  He got to watch some cartoons on the iPad to distract him from the not-so-fun stuff like medicine and diaper changes and evil blood pressure cuffs.  Grayson also started having some withdrawals from the morphine I think, because he couldn't stop rubbing his face.  Itchy itchy.  After that, he had a really good night.  In fact, if we didn't have to wake him up for vitals and meds, I think he would have slept almost all night.  He also didn't have to sleep with his IV in, since he was drinking his bottles so well.  I'm sure that helped.

Today is Saturday, October 27.  Grayson woke up a much happier kid today, and we even got our first smile and laugh.  Grayson stole the glasses off my face, which he thinks is sooo funny. We even got to hear the classic Grayson cackle... "ah-ah-ah-ah".  The plastics team and the neurosurgery team both think he looks great, and is doing awesome.  They were able to take out almost all his leads, and so he only has one lead left attached to his toe and of course the dreaded drain tube coming out of his head.  It was great timing, since he has decided he's done with laying down and he finds all these wires and tubes really fascinating.  Except the one in his head because I'm pretty sure that one hurts.

I think Grayson's head already looks so much better than it did yesterday.  They're keeping the drain tube in for now, because it seems to still be pulling quite a bit of fluid.  But once that's out, his forehead will look a lot more normal, even with its increased size.  He received a present today from his Aunt Meow (Kitty).  He snuggled right into his new dragon and we put the Eeyore balloon on his crib.  I think between the stuffed animals, prayer chain, pictures, and the quilt made by a Cranio Care Bears donor, we have the most cheerful colorful crib on the floor!

I'm so proud of my little man.  He's recovering so well, and trying so hard to be happy even when he's hurting.  He had a pretty tough morning after he received his meds late.  It took a really long time to get him back on track, but because he was having a hard time he got to see a therapy dog!  A volunteer brought in his 10-year old Golden Retriever named Pie (short for American Pie because he was born on the 4th of July).  Grayson stopped crying, stared at Pie, and started talking to him.  Which in Grayson language is (uhh.  Uh.  Uh.  Uh.)  I almost cried, it was so cute.  Grayson played with Pie's ears a little bit, and we were able to give him a bottle after they left.

I think that if his eyes have not swollen shut by tonight or tomorrow, that we may be out of the woods on that happening at all.  I don't want to jinx it, though.  Once they take his tube out, some of that fluid will accumulate and cause some swelling.  But right now, most of his swelling is on his right side.  Which kind of makes him look like a boxer.  Grayson Ali.  If he could wear clothes, I would have loved for him to wear his Cranio Care Bears shirt today that said "You should see the other guy".  It has a stick figure that looks just like Grayson on it.  Our little fighter ;)

So you can see the difference without focusing on how distorted his face is right now... here are two pictures of Grayson's head - one taken right before surgery and one right after.  On the left is Grayson's adorable pointy head.  On the right is Grayson 2.0 with his new Charlie Brown head.
Today is October 26.  At 7am this morning (about 12 hours after surgery), Grayson got to leave the ICU/PACU and come up to the general surgery floor.  He had his own room for awhile, but now he's sharing with another baby who looks to be about his age.  The other baby is just waking up from anesthesia at the same time that Grayson had just fallen asleep.  Well, I suppose they can have conversations with each other in baby language (otherwise known as "Wail") for the next couple of days.

The doctors say Grayson is doing really great, and being out of the ICU so fast is a good sign.  He's trying to be active already - when his morphine was running out last night, about midnight, he flipped himself to his tummy, crawled up the bed and over to me where he stood up for me to hold him.  Crazy baby.  We let him sleep on his tummy for the rest of the night, which he seemed to like despite the fact that his head wasn't elevated.  Today he's been cuddly and grumpy.  It could be that he's more alert since we've moved him from the morphine to oxycodone and tylenol.  He's also had about 8 ounces of formula today, which is great.  He wants to be held a lot.  I am having flashbacks to when he was a newborn, and he only had three stages - eating, crying, and sleeping.  Holding him is awesome, but also a logistical feat - not only does he have stitches from ear to ear, but he also has cords coming out of every limb (2 foot IVs, monitors on both hands) and also the drain coming out of his head.  That will probably come out tomorrow.  Well, who can blame him for being grumpy right?
I prepared myself for a whole different baby, and I'm glad I did, but Josh and I agree that he still looks like Grayson.  Well, a big, bumpy, lumpy-headed version of Grayson :)  If I had any doubts, they were gone the minute he started getting all feisty with us ("Oh that one trying to put me in a choke hold?  Yep, he's ours").  God Bless all those cranio moms who shared pictures with us of their babies post-op so we knew what to expect.  I'll share pictures too, but I'll probably wait a couple of days.  The drain tube under his forehead is kind making him look kind of like Frankenstein, and he still has a lot of blood around/in his mouth (great for Halloween... or nightmares).  His CT scan looks completely surreal - there's a lot of bone missing and rearranged, which explains all the swelling.  But to us, he's still perfect.
We got a page at about 7:00pm that Grayson was out of surgery.  The surgeons sat down with us to tell us that everything went really well, and to tell us what to expect next.  The craniofacial plastic surgeon said Grayson's face was really small!  The smallest he had ever seen.  So, he had to widen both the forehead and the orbital bones quite a bit.  There didn't appear to be any pressure on his brain, but it was really really tight right between his eyes sort of where the bridge of his nose is.  Grayson's brain should start filling up his new head pretty quickly.

We're in the recovery room now, because the ICU is full.  There isn't anyone else in here though, so it's kind of like having our own private gigantic room.  Grayson also has an ICU nurse here with him 24-7.  We got to see him for the first time around 8:30pm.  He looks pretty strange.  Not only is his head extremely wide, and swollen, but he has a drainage tube running across his forehead under the skin, and coming out below his left ear.  Even when he sleeps, one eye is open, while the other is mostly shut.  Hard to describe, but I'll just say he looks really strange, and you probably don't want to see a picture.  Not until some of these tubes come out anyway.  He still looks cute to me, though.  I can see the inside corners of his eyes for the first time!  He'll look a bit overcorrected for about a year, they say, but I can already tell that his new head is going to look awesome eventually.

He whimpers and cries out a lot, but they're keeping him pretty comfortable with morphine until he can take Tylenol.  I got to hold him for a bit too, which was really great.  He's back in his crib/bed now and hopefully he'll get some good sleep for a couple of hours.  I taped his prayer chain from Cranio Care Bears at the end of his crib, which is so cool.  Shelby from CCB came by to deliver the most wonderful awesome care package, and to provide some company and comfort while we waited this evening.  Thanks to all for the support and prayers today.
We were given this strange historical artifact to give us updates throughout the day....
I think I remember how to use one.  If not, I'm sure there are instructions in my DeLorean.   We already got one page to tell us that the surgery started at 2:30, and everything was going well.  I'm happy that we have a link to our little man.
And, here we are again!  Today is October 25.  We drove over last night from Spokane.  Spokane was only in the 30's when we left, so Seattle's balmy 55 degree temps felt pretty warm.  We saw some snow on the pass - a reminder that ski season is just about here....and that we need to put the chains in the car again.

We stayed at the Hyatt Place downtown, which is an awesome hotel not only because the rooms are huge and there's free (hot!) breakfast, but also because they have a shuttle that runs within a 1-mile radius of the hotel.  We took advantage of that, and took the shuttle down to Pier 57 to ride the "Great Wheel" - Seattle's new tourist attraction, a giant ferris wheel that sits on the edge of the pier and extends 40 feet over the water.
We all thought it was pretty cool.

We went to Red Robin for dinner next, where I took the liberty of ordering the biggest dessert they had after dinner - Mountain High Mudd Pie.  It's kind of like Paradise Pie for you Hawaii folks.  I'm pretty sure they just filled a mixing bowl with ice cream, put more ice cream and crust on top, flipped it over and cut it into fours.  Amazing.  Grayson really liked the car game at Red Robin - I wish we had one of those for our house!
G-man loved crawling all over the hotel room, using the rolling couch ottoman as a walker, and admiring his new "friend" in the full length mirror.  He slept surprisingly well for being in his pack n play, and I woke him up at 5:30am so he could eat before the cut-off time.  Since he wouldn't be eating for at least 6 hours after that, I fed him until he looked like Violet Beauregarde from Willy Wonka after she turns into a giant blueberry.  Only Grayson Beauregarde was filled with 8 ounces of Enfamil and a whole container of prunes/apples (you know, to give the surgery team a present....only it backfired and Josh and I got a present instead.  Thanks Grayson.)

For you cranio moms, I took one last picture of Grayson's head this morning.  You can see his trigonocephaly really well.  For those of you saying "trigono-what?", trig means that his head is triangular shaped because his forehead was unable to grow any wider from birth.  So as his brain grew it just grew toward the back and sides where the sutures were open and able to expand.  Despite the fact that I don't want Grayson's face to change AT ALL, and I love him just the way he is, pictures like this remind me that he does need this surgery, and we're doing the right thing.  Sometimes I forget that he has trig because he has so much hair!

We got to the hospital around 9am.  Grayson had pre-ops and labs scheduled in the morning and then surgery check-in at 11am.  He didn't cry when they drew his blood.  Didn't even flinch.  I was super impressed (both with my son, and with the person who drew his blood!)  I sure hope they don't need extra anesthesia to put down our tough little rhino... "we're gonna need a bigger boat".

For the second time, we checked in at the surgery center, and began the waiting process.  And... it turns out once again that they have an ICU bed problem.  But we weren't turned away.  He just won't be spending the night in the ICU after all, but in a recovery room, until a bed opens up.  So instead of being checked in at 11:00, they weren't able to take him back until 1:10pm until they got it all sorted out.  We got more cuddle time though, so I was okay with that.  He should be done sometime around 7:10 tonight (one hour to put him to sleep, another 5 for the surgery).  I can't say enough wonderful things about the Seattle Children's staff.  Everyone that interacted with us was so great with Grayson, and so thoughtful and considerate of us.  They even brought us lots of toys to play with while we waited in the room, although after 7 hours without food or water, only Baby Einstein on the iPad was going to cut it for G-man!  We changed him into his hospital gown, and they apparently only have big kid socks, but I put them on him anyway. They were like big red legwarmers :)
The last 10 months have been wonderful and amazing, but there have also been times (emotionally) that have not been easy.  But by far - the hardest thing we have ever had to do is to hand him over to the anesthesiologist today.  Grayson was just about to fall asleep.  We were standing and rocking, and he was listening to Iz on Josh's phone.  He was super cuddly, and resting his cheek on my cheek.  I had to give him up, and of course he starts bawling.  The nurse (awesome like the rest) told me (now in tears) that he would go to sleep really fast because he was breathing so deeply.  I thought that was nice.  Nothing painful happens while he's awake - no IV lines, no poking or prodding.  And once he's asleep, he won't feel a thing.  He won't miss us, and he won't be hungry or sad.  But we sure miss him already.