Every once and awhile the possible complications of this impending surgery, those ugly things that one tries their best not to focus on, rear their ugly heads with such ferocity and I find myself getting... more

Sophia’s smile is back! We don’t know if it is the increased dose of her motility drug or the nightly pump feedings or neither, but she’s her smiling self again! I first noticed it... more

I just got off the phone with Sophia’s cardiologist who informed me that the surgery to repair her VSD and ASD will be taking place as soon as things get coordinated with the surgery team, which... more

After the last update to SW2.0 I was inundated with emails from people complaining that the site was either not loading or loading excruciatingly slowly. I determined that this was due to iWeb and it... more

We continued to work on stomach issues this week.  One day she was vomiting quite a bit again, so we tried a feeding of Pedialyte (and learned not to buy the big bottle as it’s only good for 48... more

Well, Sophia had another week trying to get her tummy straightened out.  We added an antibiotic (erythromycin) Monday night, which is supposed to help with motility.  Wednesday we started experimenting... more

It was back to school week for Sophia.  Although she doesn’t actually go into a school building, her teachers are back and will start providing services soon.  We celebrated Labor Day by making our... more

Monday is “Balloon checking day,” which means we check the amount of water in the balloon that keeps Sophia’s MIC-KEY button in place.  If there aren’t 3mls in there, it is leaking, and we need... more