Circumstance and Pomp

When I was four-years-old, I participated in my first graduation ceremony, marking the end of preschool.  An overturned wooden rowboat became an archway of stairs, which my schoolmates and I proudly teetered over to signify our crossing into our elementary school days.

My second graduation ceremony was far more monumental, as it marked both my graduation from 6th grade AND my debut vocal jazz performance.  To spice up the event, a performance section had been added to the traditional graduation program, ensuring ample embarrassing footage to follow us all into adulthood.

My friend Tessa and I stood backstage in matching pantstuits and watched as group after group of girls took the stage and sang breathy renditions of Disney songs.  We were last in the program and closed the show with our perfectly-harmonized rendition of the entirely age-inappropriate jazz tune “Angel Eyes”.  Let the record show that while the sultry lyrics were a bit, um, mature, for the group, we absolutely rocked the house (or at least as much as one can rock a 6th grade tea by singing jazz standards).

Luella’s first graduation was decidedly more low-key but far weightier: 256 days after she was born, Luella graduated out of the Pulmonary Department at Seattle Children’s Hospital.  They took a last listen to her lungs and assured me they were completely recovered from the meconium aspiration.  Barring  pneumonia, they decided they would no longer need to see her.

We’re thrilled, of course.  Initial x-rays taken in the days after she was born showed her tiny lungs almost completely covered in tar-like meconium and even after we were sent home, she was tethered to her oxygen tank 24 hours a day.  This graduation has been her lifetime in the making and it’s pretty unbelievable it happened.


But graduating from the Pulmonary Department didn’t end with a symbolic walk across a boat.  It ended with profuse thank you’s followed by a handshake, and that was that.  Without fanfare, they declared her lungs healed.  In mere minutes, the health issue we had painstakingly tracked for months was just…gone.

I’m all about celebrating victories and this feels like a big one.  Trouble is, doesn’t advise parents how to prepare for your baby’s first medical department graduation.  She can’t eat cake or walk across a stage.  And while I toyed with the idea of making her a baby graduation cap, the tassel is probably a choking hazard.

So instead, we’ll celebrate in our own way.  Tonight, I’ll hold Luella in my arms, look into her sleepy blue eyes, and croon some Ella Fitzgerald in her ear.  Because even without a pistachio-green pantstuit, I still think it’s a pretty great way to graduate.


Health Update: Luella met with Rehabilitative Medicine earlier this week to check on the stiffness in her arms and legs.  While they agreed she is stiff, they were pleased with her progress and would like to give her more time to develop.  Next week, we will meet with General Surgery to have a consultation for moving forward with getting her a surgically implanted feeding tube. We will also be meeting with Nephrology to get a wean plan for her blood pressure medication, Opthalmology to retest her eyesight, and all of our regular therapies.


A few days ago, I took a break from work to eat lunch alone while I reviewed paperwork (ahem, checked my Facebook) and found myself crowded next to a group of gal pals dining with a baby.  The baby looked about 4 months old and was entertained the entire meal by a compostable to-go container, which he put in his mouth, passed between his hands, and wildly shook in front of him.  I learned two things from watching this:

1.  Babies are interested in the same toys as my dogs.

2.  Luella is far behind in the use of her hands and arms.

We’ve always known that Luella could have challenges with her limbs as a result of her brain injury.  After she was born, doctors would come in everyday, move her arms and legs around, and tell us with a frown, “Seems like she has some issues with her tone.” When the doctor was out of earshot, we would tell Luella, “I DON’T LIKE YOUR TONE,” because, you know, HILARIOUS.

It’s pretty obvious now that the muscle tone in her hands and arms is causing issues in their use.  She has ‘high muscle tone’, leaving her arms very stiff and her hands almost always in fists.  This stiffness also causes her whole upper body to become rigid when she startles which, as another result of the brain injury, she does often.

Luella's Hands

Working on Luella’s muscle tone is one of many developmental activities we do with her each day.  In addition to regularly stretching and massaging her arms and hands, we are also doing feeding therapy, core strengthening on an exercise ball, tummy time, sitting practice, two hours of wearing an eye patch, and generally showing her how to do things that aren’t coming naturally.

Came in like a bouncy ball...

With help, Luella’s use of her hands and arms will likely continue to improve.  Even so, it’s safe to say that this may be one of the areas she needs some extra assistance through more therapy, injections, or assistive devices.

In the meantime, the dogs will be thrilled to get all the to-go containers to themselves.


Health Update: Luella’s latest EEG showed her infantile spasms are still gone! On the feeding tube front, Luella’s oral therapy is moving slowly so we will probably be having a feeding tube surgically implanted into her stomach while she continues to learn.  During that surgery, she may also have vision-corrective surgery so that she doesn’t need to go under anesthesia twice.  And maybe a nose job, just to make a day of it.

Luella in Chair