DIY Plumbing – Parent Style

It’s official, we are parents of a toddler. We’ve had our first child drops pencil in the toilet, parent is too distracted to remember to retrieve said item before flushing, parent gets to get creative to retrieve said item which has successfully flushed out of the bowl (though fortunately still in reach).


“Bubbles” PiElla says and signs for more (her own creation – pointer finger of her right hand stabbing enthusiastically into her left).

Other favorite new words: turtle, baby (“mama, daddy, baby!”). It seems like she gives a good try at saying most everything we throw at her these days.

Helping Others

A part of our desire with PiElla’s blog is to help other parents of children with lambdoid craniosynostosis prepare for what it was like.

A new lambdoid parent recently asked me how much does the skull change from the surgery, and what does the endoscopically assisted strip craniectomy procedure look like / what does it remove.  While I could try to describe these things endlessly, we have decided it is easier to simply post three videos that I made last year before and after PiElla’s surgery.  These videos are animations of her CT scans and show what the head looked like before and after.   The after video is a lower resolution and did not cover as much of the skull, but it shows the full area of removed bone.

Single Direction Animation of CT Scan BEFORE Surgery

Fly Around Animation of CT Scan BEFORE Surgery

Single Direction Animation of CT Scan AFTER Surgery

A year ago

A year ago we found out that the medical skills and resources existed just minutes from our home to enable our precious daughter’s skull to grow “normally,” her brain to develop, and her life to be the regular/extraordinary life we had dreamed of for her.

It’s easy to connect back to the fear and the pain of that time, one year ago, but the pain was temporary – the triumph will last the rest of our lives.

One Week

One week.  In one week it will have been a year since PiElla was formally diagnosed with craniosynostosis.  She was diagnosed Friday, January 27, 2012.  It is the Friday, not the January 27 that sticks in my head.  I have been distracting myself lately.  I think I am trying to ignore it.  I am frustrated that I will be out of town, at a conference next Friday.  At the same time I look forward to being out of town, life moves on.

It has been a glorious, beautiful year.   And PiElla is at an amazingly, adorable, interactive stage of growth.  I suck up every moment of it, enjoying it.  At the same time, she has discovered the word “No” and the shaking of the head.  She has a very emphatic “No no no no no no no no no no no.”  I suppose it is our fault.  She was our yes girl for the last few months.  We asked her a question, she would say yes, and we would follow through with the yes answer.  She would say yes, even when she did not understand the question.  Now she defaults to no, which results in the occasional, but hilarious, “No no no no no no no no no, Yah!”  Now we have to clarify if she understood the question.  Simply repeating it does not change the answer.  Rephrasing and asking if she understands sometimes does.  But, it is definitely fun and amazing to watch her learn and practice what she learns.

24 steps!

PiElla is a dedicated student these days to the science of walking. She’s been practicing standing up on her own since November and took her first steps on her own at Christmas. Up until last night she always topped out at 3 steps. Yesterday she kept going, regaining her balance a couple times to walk 24 steps in a row!

PiElla takes us out.

Last Friday was a first for us.  Celeste and I had just got home.  We were talking about what to do for the evening.  PiElla was happily playing.  Suddenly she went to the front door and picked up her shoes.  After trying to put them on for a few minutes she brought them to us.  She then insisted we help her put her shoes on.  We put them on.  She then went and got us shoes and insisted we put them on (one each).  She then went back to the door, stood up, and pointed to go outside very insistently.  Ultimately, she took us out, we had a great walk in the neighborhood, and had appetizers at St. Dames (local restaurant).  PiElla had a lot of fun with it, as did both of us.  It is possible we have an extrovert on our hands, insisting that we go out.  Fun!


Last Monday we went in for PiElla’s 9 month follow-up on her skull surgery.  We met with Doctors Lee and Hopper.  They were excited by how well PiElla’s head has healed up!  Everything looks great.  We do not have another appointment with them until she reaches two years post-op.

The doctors also asked if we would ever be willing to talk to another lambdoid craniosynostosis parent about the endoscopic option.  We said absolutely.

Exciting times for us!


Sunday while we were eating dinner, PiElla was determined to master the art of eating peas with a fork. She spent about ten minutes in rapt concentration attempting to pierce the pea with her fork. She was so close to getting it, but every time the pea rolled just enough to not get stabbed. Then she tried squishing the pea with the flat side of the tines, but the pea wouldn’t stick between the tines. Finally she tried setting the pea on her fork and lifting it to her mouth, but every time the pea would roll off. She never did get the pea from plate to mouth via self-administered fork, but she approached the whole thing with a calm determination and creative adaptation that was awe inspiring (not to mention incredibly adorable and chuckle stimulating).

Voting Eyes!

Mother and Father took me to another doctor today.  His office was really nice.  He had a lot of toys.  I climbed all over.  I played with other kids.  It was fun!

The nurse showed cards to me.  They had funny lines.  I looked at them.  She told me I was good and cute.  Then she put drops in my eyes.  That felt funny!  But it was okay.  She said my eyes would get wide.  Mother and Father said I would be okay.  I trust them.

We went and played more.  I had fun.  I looked at all of the kids.  I am lucky.  My doctor visits feel simple.

The doctor came and called my name.  He was funny.  He had Father hold me.  Father held my hands down.  I did not like that.  I let him do it though.  I got to look at a funny microphone.  It had lights and wiggled.  It was fun.  The doctor shined lights in my eyes.  He held a prism up to them and bigger glass.  Father said it was a mag-na-fy-ing glass.  I think Father uses a lot of silly words.  The bigger glass made the doctor look funny.

The doctor said I was far sighted.  He said that is normal at my age.  He said my optic nerves are good.  No worries about pressure.  He said I should talk to my other doctors.  It might be good to come in once a year and check.  He was really nice.

Mother drove us to her work.  Father and I took a nap.  A car bumped us.  We woke up.  I went with Father to Portage Bay Cafe.  We ate potatoes and a French dip.  It was tasty.  I had steamed milk with vanilla.  The straw did not work right.  When I bit it it stopped.  My other straw works better when I bite it.  I was confused.  The milk was tasty.

Father took me to the big garden.  He said it was the arrrgghhh-bow-reee-tummy.  We walked a lot.  The trees were pretty!  I liked the colors.  I loved seeing the Doggies!  I pet a lot of doggies.  I pet a man-ee-cured poodle and a shepherd and a weenie and a scottie and a mutt.  I said hi to everyone.  People are friendly.  The little old ladies giggled.  I had a lot of fun.

I went home with Father.  We saw cousin Caitlyn.  Father saw Alex and Holly.  I talked with them.  We went to find Caitlyn.  She had went home.  I was frustrated.  We saw Sheila and Loralei.  We went and played with them in the new park.  Louis joined us.  Alex joined us also.  I had a lot of fun.  I climbed the play structure.  I tackled the dinosaur.  I can crawl now, fast!  I can get away if a monster tries to bite me.  I am not as scared of statues now.  I think Father’s statutes are silly.  He told me he meant statue.  Father is silly.

Father and I went home.  We snacked and went to the bathroom.  I like to use the potty now.  I tell people when I need it.  I love to climb the stairs.  Father told me we had to go back outside.  I picked up the voter ballots for Father and Mother.  We went outside.  Father took me to the mailbox.  I held the voter ballots carefully.  They are important!  I put them in the mailbox.  The mailbox ate them.  Father says I did my civic duty.  I helped Father and Mother vote.  I hope Mother and Father picked the right people.

I am tired.  Mother helped me climb up the stairs after dinner.  I like to climb the stairs.  I can go up them quickly.  I do it on my own.

Time for bed.

Happy Halloween!

Little sunflower PiElla got into the Halloween spirit this year (“there are lots of little, bright, crinkly packages I get to hold and put into and take out of a basket!). We had fun visiting our neighbors and being visited by our neighbors. And (almost) no screaming! (We were expecting she might be freaked out by the costumes, but she took it in stride).





Politics gets personal

I have never felt as much of a personal stake in a presidential election as I do this time. Both candidates have their good qualities and their faults. And what they will actually do and accomplish will depend not just on their positions but on the congress and so many other factors in the context in which they govern. That said, my impression is of very divergent world views, with incredibly profound impacts for my family.

Obama’s healthcare plan puts in place protections that mean that PiElla, with all of her early health issues, should always have access to health care. Romney wants to take that away.

Romney wants to take away tax credits. Tax credits for dependents, education, and home ownership are critical in our current tight financial situation.

Obama wants to invest in energy independence with an emphasis on renewables. Romney wants to exploit every last drop of fossil fuel, adding poisons to the air and ever greater risk and instability to my daughter’s future.

I will do everything I can to keep my daughter safe and empowered so that she should never have to face the heartache of an unwanted pregnancy. But if she or one of her friends were ever to face that terrible situation, they should be able to end the pregnancy with safety and dignity. Romney (or at least Ryan) wants to take that away.

As far as I can tell, Romney is the take away candidate – take away our health care, take away our education, take away our freedom, take away our clean air. I hope you will stand with me and say you can’t take that away from me or my family; I’m voting for Obama.