We are scheduled to arrive at Children’s at 6:45 tomorrow morning. PiElla’s procedure is scheduled for 8:30. It’s the whole surgery routine again – period of fasting, early morning, general anesthesia, antibiotics, and more diagnostic radiation (live x-ray and CT scan). We’re almost too familiar with it. At least this time no hibacleanse (we couldn’t wash it off since we can’t bathe her). We assume they will put her under, take off the old cast, wash her, put on the new cast, do a CT, return her to us, and that we should be able to leave pretty soon after she has proven she can eat and excrete again. However, we’ve had no pre-surgery appointments, so we’ll be answering all those questions of what to expect right before the surgery. I guess that’s it for updates – we’ll post more tomorrow.

Mother took me to a shower. It was fun. Then she bought me ear muffs. They make the world quiet.

Mother met Father at the arena. Father was hanging out with Sage. Sage helped me put my ear muffs on. He smells like good leather. Father says Sage is a biker and a good friend.

Mother and Father went to Rebecca’s birthday.   Her birthday was at the arena.  Andy and Goldie held me while Mother and Father ate. Eldan and Melinda and Rebecca and friends were there.  I found out why I had ear muffs on. I pulled them off and it was loud!  My ears hurt. Father put them back on me. Mother comforted me. I found Mother’s sandwich. I asked her to share. Mother did not want to share. I spilled it on the floor. Mother was frustrated.

Mother and Father held me and explained derby to me. It looks fun. I want to be a jammer.  Father said I could be a derbywantedI when I am older. Derby brats help out. They have a lot of fun.

Roller Derby is all girl players. I told Mother that was really neat.

Sometimes it was a lot going on. I would play with my toy to relax.

I would then watch the game more.

It was loud. Father taught me to cheer.

Andy held me nice. I like to party.

Here I am cheering for Missile America. She was my favorite!  She was a Bottle Rocket.

Sage helped me style my new ear muffs.

I think they look good. They make it not too loud. I like that.

Father and I had a lot of fun.

I like derby.

I want to go again!  My friend Lizzie is fresh meat. I think that is  super!

Surgery is not fun.  I have done it twice.  The worst was my head.  I am better because of surgery.  My brain is bigger.  My head looks right.  My hips are almost better.  Surgery might be a good thing.  I do not like it.

I woke Father up this morning.  I said Dad to get his attention.  He said Pi and played with me.  I like that.

I told Father that Grandfather Bruce was on my mind.  Grandfather Bruce has problems with his hip.  Just like me!  I like that.  Father says that I should not like that.  I find it comforting.  I am not alone with my hip.  Grandfather Bruce has to have surgery.  His surgery is today.  He had to check in this morning.  His surgery started at the same time as my last hip surgery.  He is my hip Grandfather!  I want to be there for him.  I remember when Grandmother Carrie traveled all the way up to see me for my surgery.  I want to give Grandfather Bruce a big hug before he goes in.  I would tell him that everything will be okay.  He will ache a bit.  His hip might be sore.  He will be groggy.  But he is strong like me.  He will do well.  He will heal fast.  He is still growing.  He makes me a bigger person.  He is very kind and calm.  He does not have a beard like Grandfather Lonny.  That is okay.

I want to be there when Grandfather Bruce wakes up.  I would pat his head.  Just like Father patted mine.  I would ask him if he felt better.  I would tell him everything would be okay.  I would help him not be scared.  Hospitals can be scary.  Grandfather Bruce will brave like me.  I am sorry I cannot be there for him.  Mother and Father have to work.  They say they have taken off a lot of time for me.  It is hard for them to take days off now.  They are taking Monday off for my surgery.  I will have hip surgery again on Monday.  I hope Grandfather Bruce only has to do surgery once.  It is not fun.

I send Grandfather Bruce my healings.  He will do well.  Just like me!  I cannot wait to play on the beach with him.  He promised to take me fishing from the shore.  Grandfather Lonny said he will take me fishing from a boat.  Both sound fun.  I do not know what fishing is.  I know what fish is.  Fish is tasty.  Mother feeds me a lot of fish.  I like fish.  I hope Grandfather Bruce does not have to wear a cast.  Kicking my legs is fun.  I can only move my feet.  Grandfather Bruce should be able to kick his legs.  That will be good.  He will heal faster.

My hip Grandfather will do well.  He is a brave man.  I love him.  He will do good.  The doctors will be proud of him.  I hope Grandmother Carrie is there to take care of him.  She would be a good nurse.  She helped me at the hospital.  I hope she can hold Grandfather Bruce like she held me!  Grandfather Bruce might be too big.  I think hugs and being held are just right.

Yesterday, PiElla picked out her first physical musical instrument that was not on the iPad.  Today, she told her first joke.  As a parent these moments are the little joys that bring laughter, love, and an all around good feeling to our lives.

Just after PiElla’s surgery in February, we introduced her to Orphion on the iPad.  She totally got into it:

We enjoyed it also, as she managed to put together some cute and interesting compositions.  The drawback though was that she started demanding the iPad when we used it.  As a result, we have cut back on playing it except when we are in the mood to do so.

Yesterday, PiElla and I ran a lot of errands.  It was a hot pre-summer day in Seattle and we had an errand that took us through Fremont.  In Fremont is Dusty Strings, and at Dusty Strings is an old friend of mine from when I lived in Springfield (she in Eugene) named Molly.  Molly is the harp-pixie of Dusty Strings, a phenomenal musician, and a really sweet person.  It was her first time meeting PiElla and we chatted a bit and had some fun.  After a bit, I asked if they had any instruments that PiElla might enjoy.  We went to the small percussion instruments section and played around.  PiElla liked the thunder drum, but the spring bounced back and could have whacked her.  She also liked the vegetable shakers, but she already has quite a few rattles.  Then, we saw the mini bongos.  I was wearing PiElla on my front, so I held them in front of her.  Molly played the mini bongos for a bit, but PiElla seemed mostly uninterested.  We stopped and chatted, and I just kept them in front of her.  Suddenly she started tapping on them with her hand.  As a result, I went ahead and bought the bongos.

When we got out to the car she was thirsty, hungry, tired, and fussy.  She drank her bottle and then was still fussy.  So, I decided to play with her before taking off, as the car was in the shade.  I pulled out the bongos and placed them in her lap.  And this is what happened:

PiElla started to play the bongos and relax.  We had a lot of fun, I filmed a bit, we send the video to Celeste who got a kick out of it, and after she calmed down I took them away (she fussed a bit over that), but then she fell promptly asleep.

This morning I pulled the bongos out again and she knew what to do and started playing them instantly.  I would rate these as a success, but I need to replace the little rubber feet as they come off all too easily.

This afternoon I came home and fixed up dinner with PiElla.  Celeste joined us and then around the dinner table we all sat rolling and eating cabbage rolls.  In the center was my father’s canned smoked rock fish (delicious!).  We had a good time hanging out, but PiElla started fussing a bit as the meal neared the end.  As a result, I started playing with her by making still freeze faces.  Rather similar to the internet meme of the Dramatic Look:

PiElla started laughing hysterically and after a bit I stopped.  A few minutes later she moved back in her chair turned her head, let out a short shriek, thrust her hands out, turned her head, made a funny face, and paused.  Completely still.  Celeste and I looked at each other thinking, “What the heck is she doing?”  And then it donned on us.  PiElla told her first joke.  We lost it in hysterics.  She then proceeded to do it for us off and on over the next hour, and we lost it every time.  We also called her Grandfather and my Grandmother and showed them, PiElla got a kick out of showing off her new joke.

So there we have it, our daughter has new bongos and has officially told her first joke.  What a blast and what a great feeling of healing laughter for all of us, we needed it.

Almond is so silly.  He plays peekaboo with me.  He hides behind blocks.  He dashes around one side.  He tries to kiss me!  He is fun.  I like him a lot.

Father is not good at videography.

Congrats Scott and Noa!  I went to my first wedding today.  I met a lot of other small people.  It was fun to say hi. Scott and Noa are who gave me my cow blanket.  They gave me my goat also.  Scott was supposed to give Noa’s family two goats.  They are married now.  Everyone laughed when David said Scott was supposed to give goats.  I like goats.  Their eyes are funny.  David spoke a lot.  Mother and Father nodded.  They said David did a good job.  I liked his voice.  He pronounced Scott and Noa man and wife.  I like that.  Noa wore a pretty dress.  I tried to make the sound Father makes at Mother.  Father laughed.  He said that was not appropriate.  I gave Noa a hug.  They had delicious salmon.  I ate some of it.  It was very good.  The carrots tasted funny.  I spat them out.  The bright lady took a lot of photos of me.  She kept flashing me.  I had a lot of fun.  I like to party.

I told Scott that he is lucky.  He is now one with Noa.  They are very happy.  I like that.  Congrats to them!  I want to go to more weddings.  Weddings are fun!

I’ve been thinking about this a lot. We have had to face the heartache of watching our daughter go through medical procedure after medical procedure. Yet many of Jay’s clients and our neighbors come from places where they would be lucky just to have basic sanitation, never mind advanced medical care. We are so privileged to not have to go through the much greater heartache of watching our beautiful, intelligent daughter’s head deform and her development falter, or watch her struggle with walking difficulties and pain, if she even made it past her birth (and if I did as well). Everyone’s life is different and shaped by the circumstances they are in, but I have a heightened awareness of how profoundly different PiElla’s life would be in almost any other circumstances.

We are at a strange point in time, a point that should feel normal, but due to circumstances feels abnormal.  We are in the middle of enjoying the longest stretch of time without any appointments at Children’s Hospital that we have experienced since last October.  At least, I think it is the longest, if it is not it is close to the longest.  Our next appointment is not until May 21, when PiElla will get her next surgery for her hips.  The doctors will remove her cast, check her legs, clean her up, and put on a new cast.  Our last appointment was April 19.  It will be just over a month between appointments.  A part of me wants to rejoice, but another part is afraid . . . because it does not feel normal to not have another crisis looming for lengthy periods of time.

I am sure we will get through it, and the beautiful weather that is coming with it.  It has been gorgeous off and on the last few weeks.  We have got out.  We have felt the urge to do spring cleaning.  And as a result, our house is now a mess, while we try desperately to reorganize around a nearly 8 month old.  It is an epic battle, but I am sure we will eventually prevail, only to reenter the war on another front.

Father took me home today.  I spent the day with Mindy.  Noah is fun to play with.  Mindy takes care of me.  She is fun too.

Father took my stuff in to the house.  He came to get me.  He picked me up.  It was cold.  He put my blanket on me.

I saw Hazel.  She was on her bicycle.  She had taken off the extra wheels.  She was riding on her own!  I thought that looked fun.

I saw a bike.  The bike was lonely.  Nobody was on it.  It had three wheels.  Hazel only had two wheels.  I thought that was okay.  I asked Father to ride the bike.  He said we could try.  He said Dave and Joy are real nice.  He said they would not mind.  He put me on the bike!

Hazel saw me.  She said it was okay for me to ride the bike.  Dave took a photo of me and Father.

It was really fun.  I had to balance.  The bars were cold.  They fit my hands perfect.  It was fun!

The bike had streamers.  The streamers were fun to grab.  I played with them.

The sky was really blue.  It was still a little sunny.  The sunny spots were warm.  The shady spots were cold.

I really wanted to catch the streamer.  It was on my left.  I like looking left.  Father keeps trying to make me look right.  He says I need to look right.  He says I have torticollis.  He has started sneezing again.  His sneezes scare me.  I told him I like looking left.  He said nice things are on the right also.

I lunged for the streamer.  I almost fell!

Father made me play with the right streamer.  It was easier to grab.  It was curious.  My blanket kept my toes warm.

But I really do like the left streamer.  It is hard to grab both sides.  They are far away.

Father helps me.  I can ride with no hands.  Here I am Zen riding.  Father told me I looked peaceful.  I told him I was having fun.

Father let me ride on my own!  Hazel trusted me.  She put Doggy Love in the rider compartment.  He traveled around.  I like Hazel.  She shares her toys with me.  Sharing is fun!

I surprised Mother when she came home.  I was riding the bike.  Father was helping me!

I had a lot of fun.  I like riding bikes!  I will do it again.  I want to do it a lot.  I hope it is not so cold.  Father let my fingers get cold.

I checked Mother for teeth.  Mother checked Father for teeth.  Father checked me for Teeth!  Mother has teeth.  Father has teeth.  I still have no teeth.  I want a tooth!

Father took me to Katie Black’s Garden.  It is not haunted.  It is another Japanese Garden.  The water was missing.  It looked sad.  This garden needs love.

On Guard Germs!  I have you in my sights.  I am ready to slay thee!  I like to talk like Father.  I think it is silly.  The kind doctor gave me a sword.  I like my sword!  Father said I can depress things with it.

I play a game with Father.  Father sets me down.  He turns around.  I use my telekinesis.  The toilet paper roll was on the table.  Father left and came back.  I had the toilet paper roll.  I will never tell him how I did it.  Toilet paper is funny!

Today was with Father.  Father fed me water and milk.  He fed me in my Bumbo.  We sat on the porch.  I helped Father tie his hops.  I want to hop.  Father said I have to wait.  I asked how long.  He said until I can walk.  I said when is that.  He said it is when my cast is off.  I want my cast off.

I have not washed my hair in weeks.  I was starting to stink.  Mother and Father held me upside down.  My hair is now clean.  My head is very round.