Update

Today Ethan and I headed into Vancouver on a familiar route to Children's Hospital to see his Nephrologist. I am happy to say that he had a great check up. They are very happy that Ethan has now made it one year off prednisone. After 3 years straight, this last year has been a much needed break. Ethan continues to take MMF twice daily and we found out today that as long he doesn't relapse or have issues with his white blood cell counts again. He will likely be on the MMF for another 1-2 years. They would like him to have no relapses for at least 2 years before they try and wean him from the MMF. The hope is, in that time if he does not relapse, he will have given his body enough time to hopefully "outgrow" this disease once and for all. If he does not "outgrow" it by then, he will likely continue with Nephrotic Syndrome as an adult. I asked for statistics as to how common it is to continue with NS into adulthood. But of course, so little is known about NS that they gave me the standard answer of, "we just don't know".... So we will continue to do what we have been doing, taking it one day at a time. Everything is going well at the moment and they are pleased that his immune system seems to be doing better this fall/winter than last year. Ethan continues to enjoy playing volleyball and has had a few hiccups with getting a mallet finger fracture and dislocation last April. Which had him sitting out for 8 weeks... Unfortunately the finger didn't heal properly and the surgeon felt surgery was too risky and he wouldn't benefit from it. I am still not sure that was the best idea as it didn't heal correctly and it's continued to give Ethan pain these last few months while playing School volleyball. Last week at club try outs he hurt that same finger, although not nearly as bad this time. The doctors at the hospital couldn't tell if there was a fracture or not, so now we will be seeing another surgeon next week to see if there is a hairline fracture or not. Praying that it is just inflamed and not fractured as club season begins in a few weeks.