Sunday, February 2, 2014

One Year of Full Remission! (With Video)

365 Days.

No Protein Spill. No Meds.

Praise God!!!

What a wonderful day! To celebrate one year of FULL REMISSION! Changing your diet and changing your life can be hard. Mostly though, it's inconvenient....and people do not like to be inconvenienced. However, I think the momentary inconvenience pales in comparison to the lifetime of better health one receives. I know everyone may not have the same success with life change as we have had. I do know this though, IT WILL AT LEAST HELP EVERYONE who gives it 100%. How could eating and living better Not help? That's the catch though- most people are only willing to try "a little". I know from experience that trying to go gluten free even "mostly" is not enough to cut it. It has to be 100%! I talk to people all the time with different autoimmune problems, who want to know what we did. As soon as I give them the scoop on diet change, they lose hope. I can see on their face they think it's not for them, because it seems like too much work. But anything in life worth having, is worth fighting for, and your health should be at the top of the list! It can be upsetting how many people I meet that just want a quick, easy solution. The body is so complex, nothing about it is simple. It takes time, energy, sacrifice, research, and patience to try and figure out what may work for you. And my heart aches for those who DO put in the effort with little results. But, you never know what may or may not help you until you try. So be brave! Give better health a shot, you are worth it!
Below is our story of encouragement. I made the video because when Emma Kate was first diagnosed I did what many parents do...I looked up things about it on the web. And I looked at youTube videos. And EVERYTHING I saw was so sad and very discouraging. I wanted to see a story with a happy ending. A story that did not end in a transplant or years upon years of high dose meds with serious side effects. Don't get me wrong, I know that is a reality for many kidney patients. But my heart needed something to give me hope. Something that said it is not always that way. And I am overjoyed to be able to have made that type of video myself. That is the purpose behind it; to lift spirits by presenting a different approach to treating NS or FSGS. May you be inspired and able to make your own encouraging video one day! That is my prayer! (For some reason the video is not showing up on mobile devices, but will work from a regular computer.)
We just celebrated Emma Kate's 5th birthday, and we took her to Disney World! We all had a blast! I am so excited to say that WDW was SO wonderful about food allergies! Every place we ate had gluten free options. And not only that but it was SO GOOD! They were super nice about making sure you were taken care of and that was fantastic. We were also able to bring our own food into the park, and that was wonderful.

"Let us not become weary in good doing;

for at the proper time we will reap a harvest if we do not give up."

Gal 6:9


  1. Wow! I just found your blog and have been reading through it! Your girl is so sweet and I am SO happy she is in remission! I have to tell you, it is weird for me to read through this because I can imagine my mom writing this blog when I was little. I was diagnosed with nephrotic syndrome at 18 months old. Went into remission around the same time as your sweet girl. I would love to say I have been there ever since but I haven't. But I am 30, married, and have 2 beautiful children. It is a lifelong battle but you are in this fight with your daughter and it is AMAZING! God bless you guys!

  2. Hi, Found your blog while trying to search for herbs or similar helpful to autoimmune system. My son was diagnosed with Minimal Change (a nephrotic syndrome) disease almost 8 yrs. ago now (when he was 5). He "only" relapses once a year the past 2 or 3 years, but is becoming more & more resistive to going on prednisone. (I don't blame him at all!) He actually is registering protein in urine right now. We keep watching numbers & hoping, but I may have to call Dr. soon. I would love to talk with you about your successes (& struggles) regarding NS & your change in diet/lifestyle. Is there a way to contact you? I could give you my e-mail ...just a bit nervous about 'publishing' it. Catherine

  3. This comment has been removed by the author.

  4. I think I will share this blog with my son & see what he thinks. He is old enough & (maybe) motivated enough to make serious "food changes" if it means be healthier & staying off prednisone. Hope you are all healthy & having continued success.
    God bless - Catherine (again)

  5. Robecanater,
    Thank you so much for your kind words! I'm am always curious about how people have turned out who were diagnosed with Ns as a child. That's wonderful your mom did so much for for you! I'd love more details on your journey.

  6. CC thanks for posting! That's great your son is an infrequent relapser. Please do show him the blog! Maybe he would be encouraged that if diet change worked, he wouldn't have to take it again. That would be awesome :). Please feel free to email me

  7. I received this email, and just wanted to post on here for others to be reminded they are not alone. And I love hearing from all of you!

    I wanted to post this on your blog but unfortunately it won't let me.....

    Thank you so much for sharing. That is great news that your precious girl is one year relapse free. Watching the video brought tears to my eyes as seeing the similar paths we have been done. Brought back many memories. Our son is 3 and was diagnosed with NS last year. We are battling our 3rd relapse and unfortunately he isn't responding as well as he did in the past. Sitting here waiting for our lab results from yesterday is mind boggling....but reading your blog has given me hope. Thank you again!"

  8. I have been searching the Internet for sometime now looking for something a success story on nephrotic syndrome and nothing ! Until now your daughter is beautiful! My daughter was diagnosed with minimal change disease at 2 years old she is now 4 she hasn't had a relapse for a year she has been on tacrolimus for one year now and we are just now starting to ween her off medication completely she hasn't been on a strict diet and I would like to start doing so especially since she is going to be coming of medications and I what to start her doing this now so she can be used to this lifestyle as she grows up I would love to talk to you I have soany questions and I would love to know your diet plans my daughter is so picky about food please email when you get a chance I would appreciate this so much God bless !

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