I am happy to introduce my little sister Delphine Gertrude Gairson. She is a girl. She was born May 2, 2016 at 3:44 PM, 8 lbs 3.4 oz, 52 cm long. I am very excited for her to come home today. I love my sister very much, she is beautiful. We are all doing well!
Pi just rocked her CT scan without anesthesia!
A special Happy New Year from PiElla and family.
Celeste, “Is it time for a B-A-T-H?”
PiElla, “Beeee …. ehh …. teaaa …. echa …… Bath?”
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
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.
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!
We have officially spotted the great white shark in PiElla’s mouth, her FIRST TOOTH! It has just started breaking through on the bottom.
Fun! Now, to get a reminder to post more updates and photographs here in the not so distant future.
The day after the Fourth of July, PiElla experienced the river for the first time. She was a bit dubious about the experience, as she had been out of water for over three months. The second day, she had acclimatized to the experience and started to explore.
I am spending a few days traveling for family business. It is the first time I have been away from Celeste and PiElla overnight. Five full nights, no sweet ladies. I must admit, the thing I miss the most is waking up in the morning to PiElla’s sweet, giant smile and hello’s.
We take a lot of our public PiElla philosophy from Ian and Christina. We agree that a child should go to restaurants and events with adults. Sometimes that is easier said than done.
Tonight we went out to Cha:n, a Korean restaurant near Pike Place Market. PiElla was hungry and fussy, but did well when we were feeding her. And, by the end of the night she was not the only baby present. Everyone was sweet and understanding, and Pi had a lot of fun.
The challenging part was not being distracted from little miss long arms while talking with other parents. She managed to grab my small plate from the table, that I was feeding her from, and it crashed to the floor. PiElla’s first broken dish – at a restaurant no less. I guess this is what tips are for.
Oh, and the food was fantastic. I highly recommend the restaurant.
Our strawberry patch is jumping up gloriously. Giant, beautiful, red strawberries are climbing from the ground to meet the sun. The flavor is divine, but not as divine as it will be when we get a few hot days to sweeten them up. We have picked several small bowls now, much to the delight of everyone – especially PiElla.
The first ripe strawberry in our yard was a giant. It smelled great and had a wonderful flavor, although a touch on the tart side. We gave it, in its entirety minus the nibble of a taste test, to PiElla. And we photographed it, excessively. She had a great time with the berry and would smash it into the table when it was too hard to bite a piece off.
The following is PiElla’s photographic strawberry documentary. Click or wait to go forward.
It has been hard to convince myself to look at these pictures, let alone process them. Easter Sunday was the last full day that PiElla was orthotic free. No helmet. No cast. Just sweet little legs kick-kick-kicking. Peaceful tummy time with pushups and the first vestiges of rocking. Sitting up on her own, without a Bumbo. Able to go from being curled forward to sitting up straight. Occasional flopping over, when the world goes crooked for just a moment. And a cuddly midriff. The next day, cast. Hard. Scaly. Rough. Months on end.
We are down to less than four weeks of cast left, unless the doctors decide PiElla needs to wear it longer. We hope not, but we also want her hips to be correct, for there to be no problems in the future.
With all of that in mind, I finally spent time looking through the photographs from easter. I picked out some of my favorites, of PiElla and the neighbor kids. We spent Easter with the Radfords, neighbors, and friends (including family Ian, Christina, and Caitlyn!).
Here is to future days of kicking, crawling, and walking.