Onward

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT… Continue reading Onward

Taking a stand against tube-feeding crimes and negligence

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

Three cheers for Zander! Oh yeah, AND HIS MOM.

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.

My deal with an adorable devil

As usual, I don't know where to begin. Over the past two weeks, I have experienced the low of crying while lying sprawled on the floor with a string of snot connecting my nose to the carpet to the high of many truly perfect moments with a happy, big-bellied Stella smiling in the sun. We… Continue reading My deal with an adorable devil

Well nourished

Sometimes I worry (shocking, I know) that Stella and I don't venture out often enough for grand adventures. You know, to the Woodland Park Zoo or Pike Place Market. But then I turn on the vacuum or open the refrigerator door, and she goes absolutely bonkers with joy and excitement, and suddenly I'm certain in… Continue reading Well nourished

Open wide

So, as I reported earlier, we visited Seattle Children's Hospital this week to see Robin, Stella's wonderful and very wise occupational therapist. We wanted to check in and see how Stella is doing with solids. We were worried because she wasn't eating as much as a nine-month-old is "supposed to" by now. She had not… Continue reading Open wide

Return trip

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

Lucky seven. (Months, that is.)

On St. Patrick's Day, Stella turned seven months old. I'm pretty sure that means she can get a driver's permit. And maybe even a part-time job. At the very least, she can sit up for long periods of time before the weight of her large head pulls her over. She can tickle the ivories like… Continue reading Lucky seven. (Months, that is.)

My other resume

I've jumped back into the freelance writing life in an effort to make a bit of money while I stay home with Stella Bella. This, of course, necessitated the updating of my resume. It got me thinking. Some of my most impressive achievements and abilities will never grace the pages of this supposedly all-important document.… Continue reading My other resume

Please no.

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.