Day 21

What a busy few days we have had! Yesterday was CRAZY seeing three doctors in one day. This is just too much for Madison, and I try to avoid it but we had to do it because of some of the doctor's schedules.

We started out seeing ENT at 9:00 yesterday morning. The tube in Madison's left ear is completely out. The tube in the right ear was completely blocked. The doctor drained her ear and now the tube is working properly again. Shane and I have decided that when the right tube falls out we will not redo them. The risk of anesthesia is just too high. We would only be looking at a 10% hearing loss if we don't redo them. The doctor told us that he would only be concerned about the 10% if Madison is in a classroom setting.

At 1:00 we met with our pulmonary doctor. He was, overall, very pleased with how well Madison is progressing. We had tried to do a sleep study in June and the readings were not very accurate because of how little Madison slept. We have noticed that Madison has started snoring and is breathing louder while asleep. In the past few months, Madison has woken up in the middle of night screaming and having a hard time catching her breath. This has only happened about 3 times and her stats are still good when this does happen. The doctor is concerned about obstruction in her airways that could be causing this. The sleep study would show this. We were scheduled to do the sleep study last night. I didn't really have a good feeling about this because of how bad it was last time. Madison sleeps with Shane and I every night and is used to me being right there beside her. During the sleep study, this would not be possible and I would not be able to cuddle with her. After hearing what all I couldn't do with her, Shane and I talked and decided that we would not put her through this. We are going to have to talk to the doctor and come to some sort of compromise to meet their requirements and to meet ours.

After the pulmonary doctor we had to meet with the opthamologist. He had to dilate her eyes which was just torture on her. They had to put four different eyes drops in her eyes. He did notice some cloudiness on the cornea which we had been told before but it still isn't bad and is not affecting her vision yet. Overall, three good appointments yesterday.

Today was the day I have been so worried about. We first met with our genetic doctor at 9:00 and again, she was very pleased with how well Madison is progressing.

At 10:15 we had the cardiology appointment. Her blood pressure was really good, 114/67 and the EKG looked good as well. Madison did so good during the echo-cardiogram. The doctor did tell us that Madison now has two leaks in her heart. One is in the aortic valve and the other one is in the mitral valve. However, these two leaks are very minor. He said because they are so minor he didn't feel the need to put her on any blood pressure medicine. This will have to be monitored. As hard as it was to hear this I had prepared myself for the worse. I had a feeling this was the news we were going to hear. I think this is why I have not been sleeping the past few weeks leading up to these appointments. This is all part of the disease and is common in all the I-Cell children.

Tomorrow we see two more doctors and then we are Panama City bound. WOOHOO!! I probably won't be able to post an update on here tomorrow due to the fact that her last appointment is at 1:30. We probably won't leave Birmingham until 3:00. I cannot say thank you enough for all the prayers that are constantly lifted up for our family and especially for our precious Madison. She truly is our gift from God and has brought so much happiness to our lives and the lives of many others. We love you all!

April Riley