8

Last year, before I knew that Carley would require any form of hospitalization, I applied for a leadership program sponsored by duPont through the National Cotton Council. In essence it is a year long program that takes at least one potential candidate from each of the seven segments of the cotton industry and promotes involvement and understanding in each segment. It takes the ten people chosen for six week-long trips throughout the year to different parts of the country. In each destination they learn about one of the different segments. Last week, we had our trip to New York and Delaware. The trip to New York was to visit the options pits and offices of both the Intercontinental Exchange and Cotton Inc. The trip to Delaware was to visit duPont headquarters and learn more about the company and what they do in terms of crop protection and cotton. DuPont got started on the banks of the Brandywine River and its headquarters is located in Wilmington, DE.

What ties this whole story to Carley is that two days prior to my leaving for Delaware and New York, we got in touch with a family of a child with SED. They told us that there was a hospital in Delaware that specialized in SED. SED is so rare that many pediatricians will go through their careers and never see a patient with this condition. At this hospital, they had a physician that not only performs the rib expansion surgery, but also treats patients with SED. The name and location? duPont Children’s Hospital in Wilmington, Delaware.

Although I could not meet with them while I was in Delaware, we have spoken to the doctors and they have been very helpful with Carley. They have been in touch with our doctors and we have sent some of Carley’s medical records to them so they can review them. This should allow us to follow a path of treatment that has already been laid out for patients with Carley’s exact condition rather than one based on patients with a similar condition.

Now for pictures of this weekend. You can tell that she has been gaining some weight. She finally hit eight pounds at her Thursday night weigh in, even though she’s since lost a few ounces.