Grieving

I broke down in tears at the grocery store yesterday, realizing that everything we have enjoyed eating these last few years is about to change. I was paralyzed standing in the aisle not knowing what to buy and what to prepare that is low or no salt AND this is the kicker that Ethan will eat. Eating has always been a battle with Ethan, and I think this is because he has had very little in his life that he can control and eating is the one thing he can control. For the first year that he was off prednisone we did stick to a low/no salt diet because we didn't know if he would relapse and it was just easier to stick with the plan in case he did. Consuming salt contributes to weight gain, fluid retention and puffiness. When Ethan was younger and couldn't talk he would literally pull at his skin because it hurt from being so puffy. As I was searching the grocery aisles for low salt options, it took me back and I began to grieve all that we have enjoyed these last few years. Ethan and Jeff's Sunday night tradition is to make nacho's and Ethan just loves the hint of lime chips. So for now it is back to the low sodium version and probably not every week either.

I have been so thankful for every day that Ethan has been well, for the vacations we have been able to take and for the fun activities we have done together. I have not taken one day for granted, and so I also grieve the loss of what we have enjoyed as I know things will soon change. I am so not ready to go through this again, neither is Ethan. But it is looking more and more like we won't have a choice. Ethan is now at the highest level of protein and so it is only a matter of time before he stops going to the bathroom and starts retaining fluid. His eyes upon waking in the morning have started to swell, he is very tired and super thirsty, which are all signs of a relapse.  Our family doctor called me yesterday to tell me that Ethan's urine tests results were not good, I already knew that, but I guess the doctor's can't just trust me and have to document it in his chart. He said he will be contacting our local pediatrician on Monday for a referral, but in the mean time if he gets worse before we can see someone he said to head to the ER. If it was up to me I would take him today to Vancouver, but I have to be patient and not go too soon, but I don't want to wait too late either or he gets very sick and then would likely have to stay there for a few days. So for now, we are at home and I will let you know if that changes.