This morning Ethan and I headed into Children's Hospital for a checkup. It has been two months since he has stopped prednisone and started this new drug. I have to say that Ethan is managing far better than I ever thought he would. They prepare you for the worst and tell you to hope for the best. So it was great to hear from his Nephrologist today that they are SO pleased with how well he is doing on the MMF. In the two months since he has been off prednisone he has grown 2 and a half cm. Which is fantastic, he has a whole year of growing to catch up on. His blood pressure was a little lower than normal this visit, and when I told them that Ethan almost fainted after being in the hot tub while we were in Maui over spring break. They said it was likely due to his blood pressure being too low and being in the hot tub too long. We had a fantastic time over spring break enjoying the sun and being with my family in Maui. We soon found out that the MMF causes sun sensitivity, so Ethan was a bit disappointed that he couldn't be out in the sun like he usually can. Even with a high SPF, he still managed to burn, but he came home with some color which is what he desperately wanted. His Nephrologist said that being in the Sun is really good for his bones, and he was happy that we had a chance to get away.
Ethan is still dealing with a lot of bone and joint pain and his Neph hopes that as time goes on and he remains off prednisone that it will improve. So for now the plan is keep him on the MMF for the next year and then they will talk to us about weaning him. The hope is that the MMF gives his body a good rest from the steroids and that maybe he will get another few years off of everything. But he did say that Ethan could still relapse even while on the MMF and if he gets protein he will have to go back on prednisone. He has been sick once so far while on the MMF and they were pleased that he didn't get a fever or have any protein. Hoping and praying that continues. It has been an absolute joy seeing Ethan's true personality coming back, his smiles and sense of humour. I have really missed my son. Although he is very tired still, he is slowly finding the energy to return to sports and is enjoying playing badminton and club volleyball. Thank you all for your continued prayers, we appreciate it so much.
