Just a note to say that in this blog's navigation I've replaced the "Stella's Tube Wean" page with a more broad and helpful "Tube Weaning Stories" page. All of these children's stories deserved to be more prominent, darn it! I plan to fill this page with links to dozens and dozens of weaning stories (with… Continue reading New “tube weaning stories” page
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
Remember Zander? Well he's got company. (The tube-free ranks are growing.) Sadly, I kept putting off this post because the hugeness of the triumph deserves a truly well written, heartfelt description. Which takes time and energy that I've been lacking, though I've so wanted to muster it! But then I realized that I can't tell… Continue reading Hooray for Heath, his mom, and inspiring tube weaning success!
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.
Trying to wean your child off of a tube? Bravo! You'll find comfort, resources, and encouragement in this online support group: Tube Fed Children Deserve to Eat It's a social network powered by Ning Grouply, with the purpose of "Connecting Parents of Children with Tube Feeding Issues." There you will find a wealth of information… Continue reading Support and community for parents of tube-fed children
When is the last time a research paper made you cry? Around the time of Stella's wean, and since then, I've come across information that moved me on many levels. I'd like to pass along these sought-after papers to as many parents (of children and babies with feeding aversions and NG tubes or g-tubes) as… Continue reading Behold: Tube weaning research and guidelines
Stella has been getting more and more difficult around eating again and I am starting to freak out about it. She is starting to refuse the bottle more and more. She doesn't want to eat upon waking up after sleeping for 10 to 11 hours. We now wait an hour after she wakes up, and… Continue reading Please no.
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.
Today, Stella enjoyed 1000 mls from the bottle. It's our family's equivalent of breaking the sound barrier, or walking on the moon. It's historic and worthy of endless news coverage. I just fed her. It's such a lovely, peaceful, fulfilling, loving experience--even if it's not breastfeeding anymore! We sit in the rocking chair next to… Continue reading A “grand” day
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