Back in 2015, my husband and I wrestled with the decision to have a VNS placed for our son Owen to help with his seizure management. It was a decision that we didn't make instantly. You can read about that process in this post. VNS Surgery Day. Now that Owen's device has been in … [Read more...]
5 Tips for Road Trips with a Child with Angelman Syndrome
When your family has a child with Angelman Syndrome, like our Owen, traveling can be challenging. Owen thrives in routine, and while he enjoys seeing new things, he's often overwhelmed with stimulation on the road. This leads to an increased seizure threshold, and behaviors. … [Read more...]
15 Products that Are Essential for a Child with Angelman Syndrome
My 13-year-old son Owen has Angelman Syndrome. And since today is Angelman Syndrome Awareness Day, I wanted to share my top fifteen products that have been helpful in our AS journey. Most of these aren’t big, medical equipment type items. You will find a handful of those items … [Read more...]
How To Teach Your Kids How to Swallow Pills
Do you need to teach your kids how to swallow pills instead of chew them? Here's a strategy that's worked for every child I've tried it with. My son Owen has a g-tube. For the first several years of his life, all of his medications were liquid and we simply put them through … [Read more...]
How to Handle an Angelman Syndrome Poop Party
If you have a child with Angelman Syndrome, poop party may be a term you’re familiar with. They’re an unpleasant part of raising a child with a severe disability. Since poop isn’t typically a socially acceptable discussion, there’s not a ton of information on dealing with … [Read more...]
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