I got back from my California last night. Our plane was delayed so I didn't get home till around 10:30 PM. My doctor appointment was pretty un-eventful, which is a good thing. They took me off of one of my medicines and put me on another, since the previous one I was on could cause lung problems along with Thyroid problems; hopefully with that medicine out of my system my Thyroid will go back to normal. Other than that, there were no changes. My pressures were still 80 - 85 (a normal person's Pulmonary Pressures are 10-15!) At some point they may take me off of another medicine and replace it with another; but at this time, they are not doing that.
I got to meet a little girl from California who has the exact same thing as me. She is 8 years old and had her 4th open heart surgery about a week or so ago. She was adorable. =) I always love meeting little kids who have heart defects because seeing an older kid with their defect really helps give them and their families hope. If I was able to grow up, then their kid may be able to as well. And I know that kids with heart defects need as much hope and help they can get. When I was talking to her about camp, how we both had Pic Lines at some point in our life and how we both have scars; she just randomly came up a hugged me tightly around the legs. I leaned down and wrapped her up in my arms. Later on the nurse talked to my mom and told us that the girl was extremely shy, so it was amazing how she felt so safe and comfortable with hugging me after she just met me.
Its tough being chronically ill, but if I can give a kid some hope and realize that she will be able to lead a relatively normal life, then I don't mind having a chronic illness.
Love and Hope,