Negative

I am so happy to tell you that Ethan is finally back to negative for protein. Thank you to all of our family and friends who have been praying so hard for Ethan these last 2 weeks. This is truly an answer to prayer as I have said before, in the last 10 years we have only experienced protein going down on it's own less than a handful of times. I wanted it to go down on it's own, but I was also preparing myself for the possibility that it wouldn't. So I finally feel like I can exhale, breathe and let go of the tension and anxieties of these past 2 weeks. I went out for coffee with a friend, had my In Laws over for dinner, getting back to normal around here and it feels good. Our biggest challenge will be to keep Ethan healthy, the Fraser Valley is being hit hard with colds and flus, and so we will have to once again be more vigilant about germs. Praying for God's hand of protection over Ethan and our family to help keep us all healthy. This whole issue of keeping Ethan healthy has at times been so misunderstood by people. I could write a whole blog post about the not so nice comments people have made to us over the years. My point is we don't want to keep him from living a normal life. But we are trying to keep him away from those that are actively sick and contagious. So I leave you with this, we don't know what tomorrow holds and I am really working on not borrowing trouble from tomorrow. So I will be thankful for today, that today is a good day and God is still GOD, even if things change!

1.0

It's hard to believe that one week ago, we discovered that Ethan was having protein at 1.0. So it seems rather fitting that today his result would be the exact same, 1.0. This is great news and we are thanking God for answering our prayers. It is looking like we will avoid a relapse now after all. Ethan is feeling a bit better today too, less dizzy so that is also great news. He was very excited that he is coming down and is already thinking about when he can have some of his favourite salty chips! Although I am not ready to allow that just yet. I would say Ethan will be negative for protein in about 2-3 days if things continue to progress like they have.

I have to say that this week didn't bring out the best in me, I feel like everything I had learned over these last 10 years went right out the window. I replaced my trust in God with fear and anxiety, and I am not proud of that. To be honest, I am still scared, if protein could come on after 3.5 years, what's to say that it won't happen again when he gets sick? I guess it is a reminder that Ethan's Kidney's still don't function like ours do. 

Our Sunday our Pastor said the following: " We need to live in utter moment by moment surrendered dependence on God"!

Coming Down!

I heard from our family doctor today after he had spoken to the pediatrician we used to see. She advised that we call Children's Hospital directly and ask their advice as to what to do if Ethan continues to spill protein. I will wait till tomorrow morning to call because it looks like Ethan's protein is coming down. He was in between two levels this morning, the 3.0 and the 1.0. It is a very good sign that Ethan continues to be at the same weight too, although he has had some swelling around the eyes, it hasn't shown up on the scale. Will let you know tomorrow how he is, but we are so relieved that the protein appears to be coming down. Very scared and cautious to say that because it could all change again, but for now, I am trying so very hard to focus on this day and not borrow from tomorrow!

3.0

3.0 is the number that Ethan is today, which is one level down from the highest, YAHOO!!! He continues to spill though which is not a good thing, but so far he is not showing any weight gain on the scale. His eyes are puffy and a bit swollen and he is complaining of a headache, achy and being very tired and thirsty. Probably due to all the excess protein in his body. So for now we continue to wait and see what happens. I hope to hear from the pediatrician tomorrow, but who I really want to talk to is Ethan's Nephrologist at Children's. Last time we saw him, he jokingly said he hoped to never see us again. I want to know what all this protein means, because we really felt like he had "outgrown' this disease like they have been telling us he would since he was diagnosed. Do we have to worry and wonder if a relapse is around the corner every time he gets sick again? I think I have sprouted a few new gray hairs this week, but trying so very hard to put this all in God's hands and I thank you all for praying, we do feel your prayers and it is what is keeping us going!

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.

Doctor's Appt

Just came back from our family doctor and it went pretty much like I thought it would. He doesn't know ANYTHING about Nephrotic Syndrome, so he has no idea what or how to treat Ethan. I already knew that, but my reason for taking him there is that we needed a referral to our local pediatrician who takes care of Ethan in between Children's Hospital visits. He did order some urine tests, Ethan was very happy that they didn't want blood tests like they normally do.  He put a rush on his urine test and hoped he would call me by tomorrow lunch with some more news. He said he will call our pediatrician and see where she wants to go from there. Ethan and I would rather that Children's Hospital dictate treatment if that is needed, versus our local pediatrician. But we know from past experience, that he has to be a lot more sick and swollen before we can go there. I jumped the gun a few years ago and took him too early and they weren't very happy with me. So for now we wait, oh how I hate the waiting, never gets any easier....

Possible Relapse?

It is with a heavy and anxious heart that I have to tell you that Ethan is not doing very well. He got sick over the weekend with a cold that is going around his class. On Monday he started to get a fever and I thought, well it has been awhile I might as well test him to see what he is at. I was thankful that even with a fever he was just a trace. The next day he felt well enough to go to School, but when he came home he was really pale, and now that I think of it, we have been noticing his paleness for the last few months. Which is also a sign that something is amiss. Ethan also drank his entire water bottle at School and was still saying he was super thirsty, which is also not a good sign. Ethan does not like to drink water and normally does not drink a lot when he is healthy. When he is having protein in his urine, the thirst mechanism gets turned on and they want to drink a lot. But the problem with that is that it also signals to the body to keep all of the liquids he consumes inside his body. Which is is why he gets so sick, all the toxins in his body don't come out like they should through his urine.

I had this feeling late last night just before he went to bed that I should test him and see how he was doing, I can't explain why, I just felt like I needed to. Testing isn't something I have done a lot of lately either, unless he has been sick, then I do, just to make sure. I was utterly and completely shocked to find that he had protein and on the scale of the test strips he was in the middle, well above a trace. Which is what he was just the day before. After 3.5 years of Ethan being healthy and off all his medication. I honestly thought I would never see protein in his urine again. I guess I just finally relaxed to the point where I thought he had for sure has "outgrown" his Nephrotic Syndrome. As Ethan went to bed last night, I prayed for him that his protein would go away on it's own without any medical intervention. Over the last 10 years that he has had Nephrotic Syndrome, I can say that it only went away on it's own less than a handful of times. It is still possible of course and we are praying to that end, but as the day goes on and more symptoms appear. I am feeling less confident that this will be the case. I am so thankful for Ethan's teacher and so blessed that he is able to go to a Christian School. I emailed his teacher this morning to let him know what was going on and he emailed me back saying that they had all gathered around Ethan during their prayer time and prayed for him. Reading that brought tears to my eyes, and I have to say I am sure going through a whole range of emotions right now. One thought that keeps coming to my mind is that I know God cares for Ethan so much more than we do and will be with us if we have to travel down this road again. But I am so struggling at the thought of having to do this all over again, all the side effects, tests, medications. It was such a dark and lonely place for 7 years, I don't want to go back....

This morning when Ethan woke up his eyes were slightly puffy and I carefully documented his weight in my notebook, something we have to do every day while he is having protein. I also tested his urine and was disappointed that he had gone up one level to 3.0 protein. I made a doctor's appointment with our family doctor for tomorrow after school. We have to start all over again and get referral's to pediatrician's and probably for us to see a Nephrologist at Children's Hospital. I will keep you posted as to what I find out tomorrow, but for now we will watch and wait to see what happens. If Ethan continues to have protein and starts to gain weight, he asked that we take him to Children's Hospital in Vancouver rather than our local hospital. Which is probably for the best anyway, because we would be able to see a Nephrologist right away versus waiting months to see one by referral. When he has protein, he cannot wait months to see someone!  So there you have it, we would really appreciate your prayers, hoping this turns around before any medical intervention is needed.