Another Checkup

Ethan had another checkup with our local pediatrician this morning. I can't believe that he has now been off prednisone for 3 months! Ethan is still doing well, he grew another 1/2 inch this month. His doctor is very pleased with his progress, he is staying at a trace of protein and as long as he doesn't go up any higher she said not to worry! Easy for her to say Right?

The only health concern that is bothering Ethan at the moment is his skin. Ethan has eczema, and since stopping prednisone, we have seen his eczema continue to get worse. It has been years that Ethan has had any length of time off of prednisone, and I am not used to seeing him react to anything and everything.

I did question the doctor about this today, and she said that Ethan's immune system is relearning how to function on it's own. Many years of prednisone use, have suppressed his own immune function, and his body is kinda going haywire right now, trying to figure out what to do. She hopes with time his skin will improve, for now she prescribed some stronger cream to see if that helps. His eczema was getting so bad, parts of it were starting to get infected.

The best part of the visit was that we have now graduated to seeing the doctor in 3 months, instead of every month. Wow, I can hardly believe it, whatever will we do with all our free time? This is a really big deal for us, when Ethan relapses, we see the doctor one or more times a week, to once a week, to once every 2 weeks to once a month while he is on his medications. Once he is off all his medications, they see him once a month for 3 months. If he is still doing well at our next visit in 3 months, then we can graduate to once every 6 months! But I am not getting ahead of myself just yet. School is just around the corner and I have no idea what that will bring!

FSGS

FSGS is also a Kidney disease, which is very similar to Nephrotic Syndrome. They have similar symptoms and drugs used to treat it. There is also no known cure or cause for FSGS. The main difference with FSGS, is that you do not outgrow it, like you can with Nephrotic Syndrome. The following link is of a video of a boy who is suffering from FSGS, it reminded me of Ethan and our situation. There is a small percentage of Nephrotic children who do progress to FSGS, but for now, Ethan's doctors are confident we are still dealing with Nephrotic Syndrome. The "good" kind of Kidney disease, as they like to call it!!! I guess if he has to have one kind of Kidney disease, the "good" kind is the best! Right?

http://www.youtube.com/watch?v=_B-C3Rj5Vfk

Diagnosis- Anniversary

Today is the 7th year anniversary of Ethan's diagnosis of Nephrotic Syndrome. All week I have been thinking about Ethan and our journey that has led us to this point. All the many hard things he and we have endured, and the many blessings that we have received as well. I must admit that it has been painful this week, remembering each relapse, treatment tried, the countless doctors and lab appointments.At the moment, Ethan is still doing well, and we are so very thankful for that. As for what may come, I do not know.... I have no idea if and when Ethan will relapse again, or if this is "The" time he will outgrow this disease. I have been wrestling with these questions for some time now, and I have come across a great song. It is called "Dive", by Steven Curtis Chapman. In the song it talks about taking the leap of faith, giving God control, that sink or swim, you're diving IN! I have posted the link below if you would like to take a look. I found it very encouraging, to a lifelong worrier, diving in and letting God have complete control is my ultimate GOAL!

http://www.youtube.com/watch?v=hXqXIicm8uU

Reflections of Summer

The countdown is on, only 3 more weeks until School starts. I am feeling excited for the year ahead, as Adam enters Grade 5, he cannot wait for School to start. It has been an absolutely wonderful relaxing summer, with no schedules, and only 2 doctors appointments.We have been blessed and feel very thankful that Ethan has had an amazing summer, health wise as well. He continues to be a trace in his urine samples, he has had a few days of stomach aches and complaints but nothing like he has in the past. With School on the horizon and all that comes with it, I am praying that Ethan will continue to remain healthy.