On top of having surgery all the time, I have to see the doctor all the time. This isn't so bad, but it means that I have to miss a lot of school. I have been seeing both Dr. Kashima, who is my Otolaryngologist (my throat doctor) and Dr. Marcus, who is my Pulmonary doctor. I have to see a Pulmonary doctor because I have asthma also. My mom says she is not really sure it is asthma, but if the asthma medications work, then she will go along with that diagnosis.

I like seeing Dr. Kashima. We have a routine down and it usually doesn't take long for office visits. The only time I don't like coming in to the office for a visit is when my mom brings me in because I am making noise in my sleep or she is worried about my breathing. That almost always means after he checks me I have to have surgery. When I go in to see Dr. Kashima he always has me go for flow loops to check my breathing. I breath into a machine which shows how much trouble I have moving air. Sometimes he also has me go for a chest x-ray. Usually he does this when I am having breathing trouble or if I haven't had one in a few months. He checks this because he wants to make sure the RRP doesn't spread into my lungs because it is in my trachea. About every 6 months he also has me go for a CT Scan, where they put me in a tube and have a machine spin around me and take pictures. After I get these tests done he looks at everything and then he scopes me. He puts a long scope through my mouth to the back of my throat and he can see my vocal cords and take pictures of them. This is called a rigid scope. He records all of this with a video so he can go back later and see it.

Sometimes when I have had breathing trouble and Dr. Kashima isn't there, doctors use a flexible scope to see what is going on. I hate this. A flexible scope goes down my nose. They always tell me to relax, take deep breaths and swollow, but it hurts. I will sit still for it now, but my mom told me I wouldn't used to. When I was little they did this and my mom had to hold me down, because I wanted them to stop and was trying to pull it out. Sometimes when they have used the flexible scope I get nose bleeds for a few days after. When I saw Dr. Rosen in Pittsburgh he gave me a choice between the rigid scope or the flexible scope. That was an easy choice for me.

My visits to Dr. Marcus are usually very simple and routine. She has PFTs (pulmonary function tests) done to check my breathing for the asthma and then she listens to me lungs to see that everything is okay. She also follows me for the Interferon study I was on. She has blood work drawn every month or so for this. I really don't like needles and don't like getting my blood drawn. Sometimes they trick me into turning away and grab my arm and take my blood. She also checks my height and weight because they don't know what the long term effects of Inteferon are and think that it stunts growth. So they want to make sure that I am growing alright. When I get back in August, Dr. Marcus is going to work with Dr. Rosen to do my routine follow-ups at Johns Hopkins so I don't have to go to Pittsburgh quite as much, but I will still have to go sometimes.