I can see you now

Carley is getting glasses. After many visits from different opticians, it was determined that Carley was nearsighted and could see no further than six inches in front of her face. Nearsightedness and retina detachment are a common problem with children with SEDc. Luckily, no retina detachment has been detected in Carley. Tonight she had the different lenses tried on her and we decided to go with the pink ones pictured below. She should have them ready by Friday. I just hope what she sees now doesn't frighten her.

Locks of Love

Last night Carley got her first haircut. She really likes laying on her right side, so she had some long strands of hair on her left side that was driving us and the nurses crazy. In some pictures, it looked like she had a mullet. After a lot of talk and requests, we found someone willing to do the job. JuAnna did the cutting and Florissa did the holding (to protect the nurses from getting written up, I have changed their names. I heard the last time a nurse cut a parents hair in the NICU, she got in trouble, so I'm going to play it safe). I'm not sure Carley is too pleased, but as the days get hotter, I'm sure she'll appreciate the haircut more.

Two Ounces

Yep, tonight little Ms. Carley went over eight pounds for the first time. She weighed in at 8lbs 2 oz according to her nurse Nicole. She has had a very good week except for the discovery of a right busted eardrum on Friday. Other than that she's doing great.

Spring Time in the NICU

Spring Camouflage

Look at me pout

Mirror, Mirror, on the wall, who's the fairest of them all?

Have a great weekend

Nothing new to post really, just wanted to share some recent pictures. Not much happening as we wait for a response from San Antonio. Carley is doing great, so here are a few pictures. Have a great weekend.

Nada nuevo por aca. Todo esta bien y sigue progresando Carley. Bonito fin de semana.




Sleeping, eating and pooping


Jet lag. This was a nap we took together after I got back from China.

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.

It's my birthday!!!

and my dad finally had time to update my blog. Jeez. I guess he forgot blogs are supposed to be updated daily. But it's okay, he's still the greatest! Even my nurses think so. They are always saying "Aarrgh, that Carlos" but then they whisper. I guess they don't want to say good things about him in front of me.







I apologize for not posting in a long time, but I have been really busy. I had to go out of town again last week and although I thought I'd have time to update the blog, I never found it. Well, here I am tonight just letting everyone know that Carley is six months old. This is a pretty big milestone in her young life, and we are excited. However, I told my wife that I was going to stop celebrating monthly birthdays because I now have my site set on bigger things, like yearly b-days. Anyway, I promise to tell everyone later all about my trip and how it relates to Carley, and everything else that has happened since my last post. In the meantime, here is a picture we took tonight.







Hoy cumplo 6 meses de vida. Gracias a todos de nuevo por todo el apoyo y oraciones en los ultimos 6 meses.