Reflections

Summer time and the living is easy!!! We are now a few weeks into summer holidays and I must say we are loving it! It has been absolutely wonderful to have no schedule, no need to get up early, and I am loving not having to get up early and give Ethan all of his medications. In the last 7 years it has been primarily my job to give Ethan all of his medications, and I must confess that I am tired of it. I am sure Ethan is tired of taking it too! I am still daily testing Ethan's urine, he goes between trace and negative every few days. When we saw Ethan's Nephrologist last week, he asked me how often I test Ethan, and if I have ever NOT tested him in the last 7 years? I said I test him every day, but No, I have never NOT tested him, Are you Crazy??? He said, his goal is to get Ethan and me, to the point where we can go a whole year without testing. Wow, now that is a goal!!! I told him I didn't know if I could do that, it strangely gives me some sort of peace knowing what his result is, I don't know if I could relax not knowing. Also, testing every day allows us to detect a relapse long before it becomes out of control. In his defense, he said he was a true optimist, and I told him, that I am NOT. What a combination!!!! 

If you have seen Ethan lately, you will surely notice changes in him. Physically he has slimmed down, grown taller, he's had a big decrease in his appetite. Which is very strange, I am so used to him eating so much on the prednisone. I know I keep saying this, but we are so happy to see Ethan giggle and laugh. To see the joy in his face as he experiences life is so rewarding, we used to take him places and feel so discouraged, because all he did was complain that he didn't like it, didn't feel well, and that he just wanted to go home. If you know Ethan, he can be mischievous at times, Now, he loves to jump out and scare his older brother, just to see the reaction he will get. These may seem like small and normal things to other people but they are huge in our life, examples of life returning to normal. We are grateful for each and every day.