Tough Day

Today has been a rough day for Ethan, he woke up feeling dizzy and tired. We started noticing the side effects by the end of the first day already. Each day they have been getting progressively worse. So far these are the ones we have been dealing with, insomnia, increased hunger, stomach pains and mood changes. Ethan normally does not eat a lot but once he starts on prednisone he cannot stop eating or thinking about food. To top it all off, I need to have him eat low salt foods and that can be very tricky to do when he is craving absolutely everything! His pants are already getting tight and I worry about the weight gain. Prednsione causes the dreaded "moon face" as well as high blood pressure. I worry that kids will tease him because of his sudden change in appearance. He loves to wear skinny jeans but sadly he probably won't be able to wear them much longer. We have also noticed Ethan's mood changing. This is what I was dreading the most, it breaks my heart to see my once happy boy become depressed, anxious, and all around moody person. Today for example, I could not get him to crack a smile. I took his picture and normally he will smile for me, but not today... This is what I am grieving the most, the loss of who Ethan really is. Ethan was a trace today so I am hoping that tomorrow he will be negative. Once he is negative for protein for 3 days, I can call his Nephrologist back to determine what the next steps will be. I have no idea how this is going to go, or what they will want to try. It seems every time is different, but I do know that Ethan does not respond well to a fast weaning process. His body seems to need a long time to come off the prednisone which can be anywhere from 6-12 months. The hard part is that he can relapse while we are weaning and then we have to start all over again. It's hard not to think about the future, but I am trying very hard to take this day by day, moment by moment. Praying that tomorrow is a better day!