I should've been asleep an hour ago. Instead of taking care of myself, I spent a bunch of this Friday evening, when Cody and I are supposed to be relaxing and celebrating our wedding anniversary, scouring photos of Stella from the time before her patch, and shots from more recent times. You see, I read… Continue reading This isn’t healthy.
It's official. Today, I scheduled Stella for weekly, ongoing vision therapy. I feel victorious! As in, "We're going to the Super Bowl, baby!" (I probably need to get out more.) You see, our second opinion (the first being Seattle Children's Hospital, where vision therapy was never mentioned, and the third being our current doctor) told… Continue reading Because we just can’t get enough therapy.
Here we go again. Like tube feeding, vision is an area in which children aren't getting the care and solutions they need and deserve. Stella just started patching, because her brain was starting to favor her right (strong) eye. And it's already become clear (fun with puns!) that without extra effort and research on my part, her outcome,… Continue reading Free webinar by Susan Barry: How the system lets down children with vision problems
Someone needs to say it: tube-fed children and their families are being neglected and often outright abused by a dehumanizing, misguided health "care" system. If you don't believe me, read on. Or at the very least, get a glimpse of a far superior alternative by viewing this tube weaning lecture delivered at Seattle Children's Hospital… Continue reading Taking a stand against tube-feeding crimes and negligence
This is part of a new segment I'm calling "Eye on Stella: Strabismus Watch 2010." Sorry. I just thought that was kind of funny. And I'm running with any humor I can find these days. The ER, whose job it is to save lives and not provide conclusive diagnoses, called Stella's condition "convergence spasms." A… Continue reading No acute abnormalities.
Today isn't just another Tuesday. It's a very important day. Today, February 9, 2010, is the day Alexander (Zander or Zandy to those who love him) left his G tube behind. For good! I can't tell you how huge this is. Due to one of the most severe cases of frank aspiration ever seen at… Continue reading Three cheers for Zander! Oh yeah, AND HIS MOM.
It's not an emergency. Nothing is really "wrong." But we're about to head back to our old stomping ground: Seattle Children's Hospital. We're going there to see Robin, Stella's occupational therapist. Stella isn't warming up to solids the way all the charts and books say she "should" by now, at the ripe old age of… Continue reading Return trip
Stella has been weighed dozens and dozens and dozens of times during her six months here on earth. More times than the average Orange County housewife--nevermind the average baby. Many more times than a parent can reasonably expect to endure while maintaining his or her sanity. For close to three months, we went to the… Continue reading At six months, a weight is lifted.
Early this afternoon, Stella got upset and took only 100 mls from the bottle. It was really weird. All my fears and worries came rushing back. Granted, she took around 180 before and after that. But what a scare. I was so upset, I yelled at Cody like a maniac. He was holding her because… Continue reading A freakout. A rant. And endless gratitude.
As Stella's occupational therapist put it, "Stella has internalized the joy of eating." Her feeding aversion is, well, history. A memory. Though not a distant memory, of course. We still get nervous if she goes for a long stretch without eating. We still watch her eating behavior like mama and papa hawks, and breathe a… Continue reading Days 22 through 25: Stella got her groove back