Summer

School officially finished and we all can breathe a sigh of relief that another year is over. Adam finished Gr. 8 and Ethan Gr. 6. I can't believe Adam will be going into Highschool next year. Time sure does go by so fast. It feels like just yesterday I was holding him in my arms.

The next few weeks we plan to rest, relax and enjoy doing well a whole lot of nothing!!! We do have a lot of doctor's appointments for Ethan coming up. He has X rays again for his arm, his bone scan at Children's as well as his Kidney check up. Ethan has not felt well enough to do much and with his arm he is limited in his activities. We recently dropped his dose to 40mg every other day, so I am hoping this will help Ethan feel better. He has been dealing with increased hunger, which has made it very hard to keep him satisfied with healthy options, especially on his limited sodium diet!

It was particularly challenging at the year end class parties. They had a lot of salty chips and foods he could not eat. Ethan asked me if he could have some chips and I said "No, he could not". At that point we were trying to get him to negative and cheating makes his protein and swelling go up. So he tried again and asks if he can have just one chip from each bowl!!! I again said "No, and I told him he had to be strong, that it wouldn't be forever, but he just can't have that stuff right now. The first thing he said to me when he got in the car that day was, "well I resisted"!!! I did buy him a Coke Slushy for a reward!!!

It makes me sad all the things he has to go through. Watching his personality change again has also been hard. Since I am the one who spends the most time with him, I tend to get the brunt of his mood swings. Some days are easier than others. Ethan has also been complaining of bone pain, which he describes as aching all over his body. I know this is a side effect of high doses of prednisone, but I will be mentioning this to his Neph just to make sure this isn't related to further weakening of his bones. I can't wait to get his bone scan done as it will also help them decide what treatments they will or won't add on to Ethan's current regime.