Update

We've had a sick little boy around here the last few days so I haven't had a chance to provide an update on Seren's surgery. The short version is that it went totally fine. Her heart took the anesthesia just fine, and she started taking her normal formula through the new tube within twelve hours.

The thing that is difficult to explain, or to even grasp when you see it, is that Seren's mental capacity essentially means she is almost entirely unaware of anything around her except her comfort level. This means that Seren generally doesn't know where she is or what is going on in a cognitive sense. She does respond to her environment, but not in the sense that she sees something and thinks "that's a noise", "that's a blanket," "that's a face" etc. This is of course, the saddest part of her diagnosis. Her severe disabilty also means she doesn't "suffer" in the sense that the surgery would have been a traumatic event for her. With a child like Seren, the difficult thing in this situation was determining whether she was in pain or not. She was generally very peaceful in the hospital which was comforting. When she cried was it just a cry, or was it pain? We made sure she got medicine, and used information from people who have had the surgery before who are able to communicate to determine what type of medicine she needed. My goal was to keep her as comfortable as possible, and return to her to her home quickly. Although there is no real proof, I think she does better in a familiar environment. Its just my mother's instinct that she does better with the least "information" thrown at her as possible, so I wanted her back at her facility asap (plus, I trust them more than I trust anyone else). So, to that end, baby girl is back to her facility and doing just fine. I'll post a picture with her face tube free soon!

It's eight o'clock and all is well....

We are all back to our respective dwelling places. Everyone is safe, snug, and, in Seren's case, doing well post-op. We're all super tired so more details will have to wait until tommorow. Nighty, night everyone.

Pre-Surgery

So-it seems that the day of surgery is almost upon us. Since the procedure is considered "elective" I'm expecting to get tossed about a bit. We were originally told that the procedure was at noon, and that we needed to get to UNC at 10:30. We've already received notice that the schedule has changed and we need to be there at 6:00 for a 7:30 am procedure. Good thing I'm an early riser!!! Here's hoping that this means that S has less of a chance of being bumped off the schedule. The surgery is only scheduled for 45 mins. so by the time most people are getting their day started we should hopefully be in recovery with the whole thing behind us! Thanks for all the thoughts, prayers, emails and hospital goodie bags. :)

xo,

J

Welcome 2010!

The Windley family is seriously excited about putting the last decade behind us! It took me a while to realize that instead of just a new year we were saying goodbye to the 2000's (what do you call that-the millennium decade or something?) Ten years ago, I ushered in 2000 in New York with a bunch of friends from law school and graduated and got my first job later that year. I met Lance in 2001. This has been one incredibly eventful decade.

This year, we spent New Years Eve roasting oysters with some great friends. It meant a lot to me to be with these people who have been so wonderful and supportive of us in the last year, and whom we could just be ourselves around. It was a really fun evening.

On New Years Day, Lance took G "hiking" in the backpack over to see Seren. Once they got there, I went and picked them up. It was time for Seren to eat while we were there, and since Seren is fed through a tube and a pump hanging on a pole, we had to roll the pump with us to the family room. G was determined to roll the pole "all by myself," and bless his sweet little heart, he did it. It took a while, but he rolled it all the way there and all the way back with Lance carrying Seren behind him. I was quite proud of my sweet and determined little guy. It was great start to the next ten years.

xo