Day 2 Birmingham

Today was the day we had to do a lot of walking downtown. We woke up to rain that was expected to last through lunch time. Out of all the times we have come up here, we have never had to deal with rain. Our first appointment was at 9:00 with the genetic doctor. Due to the rain, Mom dropped Madison and me off at the front of the genetics building and then waited for us to finish. This way we didn't have to park in the parking garage and walk 3 blocks.

The genetic appointment went very well. The doctor was very pleased with how healthy Madison has been able to stay and her growing vocabulary. After that we went to cardiology. This appointment always makes me nervous. The past 4 visits, we have been monitoring a minor leak in the mitral valve. Today, that leak looked better! However, the cardiologist did notice that the aortic valve is not opening properly. It is still opening well enough for the blood flow to and from the heart is not being affected. He said that it is still considered VERY mild but still something we need to watch. He also said that this is probably a sign of the disease progressing. Right after that statement he added that we might not ever see another change in the way the valve is functioning. We are praying that we won't see a change for the worse.

Our last appointment this afternoon was with the ENT. Madison had tubes put in December 2009. One of the tubes had already fallen out, but the tube in the right ear was still in there. Over the past 6 months, Madison has had a lot of drainage coming from the right ear. After he examined the ear he said that the tube needed to come out because it was infected and that was the cause of all the drainage. He tried to pull the tube out and Madison was screaming so hard, I asked them to stop. The doctor then asked if she was going to be put under anesthesia anytime soon and if so, he would pull it out then. When I told him we had no plans of such he decided to try one more time. He finally got it and it only took about a minute for him to pull it out. Madison was screaming so badly, but once it was out she stopped. The tube looked DISGUSTING!!! Hopefully now that the tube is out she won't have so much drainage and ear infections. We will have to wait and see. Tomorrow is our last appointment and that is with pulmonary. We will also get the results of the sleep study then.