The club

Nearly two weeks ago, with Luella strapped to my Seahawks jersey-clad chest, I frantically searched an overcrowded restaurant for a spot where we could see the NFC Championship game.  We’d already found seats in the TV annex, but they were somewhat removed from The Fun and I really, really hate to miss The Fun.

While scoping out our options, a dude appeared at my side and began taking sidelong glances at Luella.  “That’s some red hair!” he exclaimed.  Half-listening, I agreed.

Big Red in the bath

Big Red in the bath

“So, what’s going on with her?” he asks, gesturing to her feeding tube.

 I’m instantly irritated.

How could he think it appropriate to ask a stranger about their child’s health?  Why, even on the slightest chance I would want to disclose this information to a random person, would he think I’d do so with with a mid-afternoon whiskey in hand, surrounded by day-drunk football fans?

“She’s working on some things,” I cooly tell him, my usual standoffish response.

He pauses, then quietly says,”One of my kids had problems when she was born.  She stayed in the NICU for two months.  It was really scary.  But she’s a healthy four-year-old now.”  He gestures to an adorable blonde girl nearby.

I want to ask if she was at Seattle Children’s Hospital.  I want to know what the birth was like.  I want to know if she has any developmental delays.  I want give him a high-five, introduce him to Mike, and make he and his wife be our new best friends.

I don’t see a lot of other babies that look like ours.  We get stares when we bring out a stethoscope in public and are on the receiving end of a lot of “pity-face”.  But we’re not alone.  We’re part of a secret society of freaked-out parents who are dealing with some really big life questions in addition to all of the regular ones (“Will I be able to eat these chicken wings while holding the baby?” No. It is patently impossible.)

I nod in sympathy and tell him I’m glad his daughter is okay.  We murmur a few “Life, huh”/”You never do know” sentiments back and forth and trail off, until he gives Luella a final  glance and turns to leave, saying,

“Well then.  Go Hawks, right?”

Image

Looking up…

Health update: The spasms are still gone! Luella is now working on feeding therapy to try and begin taking bottles again after a nasty bout of steroid-induced reflux.  She is doing well but it is a long process.  We also found that she has poor vision in right eye, which wanders a bit as well.  She wears an eyepatch 2-4 hours a day to try to strengthen it.  We may be making some bigger decisions involving minor surgeries on the feeding tube and vision front in the near future.  As always, Luella is taking it all in stride.

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Testing, 1, 2, 3…

Since leaving Seattle Children’s Hospital in August after Luella’s initial stay, we have returned 13 times for various appointments and tests.  It’s a 1.5-hour drive I don’t mind doing because of the unrivaled care and support we receive there (and I also like practicing songs for karaoke in the privacy of my car).

Every person we have interacted with, from the cleaning crew to the head of the Pulmonary Department, has been respectful, empowering, and compassionate.  Parking is easy to find, we’re greeted and directed to the appropriate place as soon as we walk in the door, appointments run on-time, and given the level of detail our specialists remember about Luella between appointments, I am almost convinced that she is their only patient.  And no big deal, but their doctors and nurses literally saved her life.

So yeah, we’re kind of SCH superfans.

With that, here are some pictures from our last two-day stint of appointments.  And no, we have not yet run into Russell Wilson (although not for a lack of trying/hoping/fantasizing).

CT Scan

Doctors were concerned that because Luella’s brain is growing slowly, the plates in her head didn’t spread fast enough and had fused together. This CT scan showed that this likely did not happen and it’s simply a cosmetic issue!

Preparing for the EEG

Another hour-long EEG to ensure that the abnormal brain waves associated with infantile spasms are still gone (and they are!).

Waking up with Mama after the EEG is over.

Waking up with Mama after the EEG is over.

"Never give up."

“Never givup.”

Grandma and Grandpa visiting and helping out for the day.

When Mike can’t come, Grandma and Grandpa drive over and help us out.

Luella and Mommy

Just some gratuitous cuteness.

Just some gratuitous cuteness.

Up next for Luella: feeding therapy, ophthalmology, and neuro-development appointments this month.  She’s also looking forward to the Seahawks winning the NFC championship and spending a long weekend at Mt. Baker!