Back to Basics

We are home. We finally made it–through a snow storm–on Friday. Watching Ez play on the floor of our living room on Friday night was such a beautiful sight.

Our hope with this surgery was that we could get back to basics with Ezzy. You see, all this time we have been playing catch-up with seizures and GI issues, that we haven’t been able to focus the way we wanted to on her oral eating, physical therapy, socialization, and education. Getting Esmé’s seizures under better control with medication (we are going on seven weeks without a clear seizure) was really the first major step. However, as we got that more and more under control, we began to wonder how much the hernia in her chest cavity was interfering with day-to-day life: causing reflux and pain, limiting mobility and sound production, interfering with oral eating and growth…

We felt getting this obstacle out of her way might open up a whole new world for Ez. We were so optimistic going into the surgery that I often had to remind myself not to put too many things in the “My hopes for after Ezzy’s surgery” basket. It was realistic to hope that her retching might be reduced, that she might have more stomach capacity, that she might be more interested in eating orally, that she might be more comfortable…but also none of these things might happen.

And certainly it wasn’t fair to hope that the surgery would be a solution to all of Ezzy’s developmental problems–but I hoped it might help her comfort and, as a result, her focus, time learning, and ability to move without pain.

So here we are. I am not going to say that we have a giant miracle going on here at home…but perhaps a small one.

As expected Ezzy has had discomfort from surgery and initially was not rolling onto her belly or wanting to be held in a seated position much…so we just brought toys within reach and let her hang out on her back. She also seemed touchy, often crying out of the blue when I would walk into a room…and needing to be held in order to get over it. She even did one serious breath-holding spell–which, while those were part of our world before, now that I have seen her oxygen levels on the monitor throughout, it seems somewhat freakier. And this was an impressive one. She got super blue, her arms stiffened at her sides, her eyes rolled back, and she pretty much passed out. But, she came right back around…a little surprised by herself, I think, but ok.