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!