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 the tube. Then he switched to the Ketogenic diet. Since liquid medicine has more carbs, they were no longer an option. For the first time, I had to figure … [Read more...]
The Latest in Our Battle with Pica
Owen developed Pica in 2012. He was constantly on the lookout for things to destroy and eat. He tore through pillows, ripped tags off of clothing, and eaten books. For the past four years, we've dealt with emergency surgeries to remove stuck objects, worried about bowel ruptures, … [Read more...]
6 Ways My Child with Special Needs Improved My Homeschooling
The iPad’s beeping annoyingly, as a child pushes yet another incorrect button. A YouTube Video streams on my oldest child’s computer, and a couple of my youngest learners are playing with alphabet blocks. Welcome to my homeschool! It’s nothing like I ever dreamed of. As a … [Read more...]
Angelman Syndrome Awareness Day
February is International Rare Disease Month. Since Angelman Syndrome originates from a problem on the 15th chromosome, February 15th is International Angelman Awareness Day. That's today! In a hope to bring awareness to this rare disease, I'm going to share 15 ways … [Read more...]
5 Tips to Recover After an Unexpected Surgery
Owen's been lethargic and without an appetite since Wednesday. We took him to urgent care Friday, hoping to figure it out. No luck. No strep, no ear infections, no obvious signs of anything wrong. Over the weekend, we watched him closely--hoping to see signs of recovery. … [Read more...]
Owen’s VNS Surgery Update
Owen's device got turned on almost two weeks ago, following his VNS surgery in late October. He hasn't slept much since. Currently, his device is going off every five minutes for 30 seconds. My educated guess is that Owen isn't used to the sensation yet. I'm praying that … [Read more...]
An Owen Update & Fixing the Hot Water Heater
Owen's VNS surgery today went well. Thank you for your prayers! He now has the VNS device implanted in his upper chest. A couple of wires run under the skin from that to a nerve on his neck. Incisions on his neck and chest are the biggest infection risk over the next two … [Read more...]