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...]
Owen’s Surgery
Back in June, I posted about Owen's surgery. We ended up rescheduling it, waiting until the hot summer was over. It was supposed to be last month, but the day before surgery he ended up getting pretty badly burned on our wood stove. With open wounds, surgery was rescheduled … [Read more...]
A New Method of Owen Management
Owen's Pica has spiraled almost completely out of control. He is constantly on the lookout for anything he can fit in his mouth. He's tried to eat (and succeeded in some) strange things lately, including colored pencils, erasers, diaper tabs (he rips these off), socks, and any … [Read more...]
We Postponed Surgery
Hi again... A brief update to my long lost last night. After talking and praying this morning, and checking out the forecast, Bryan and I decided to postpone Owen's VNS surgery. With highs in the 100s for the next long while, and an old house with no A/C, and a little … [Read more...]