"She Is Clothed With Strength & Dignity and Laughs Without Fear of the Future."
Proverbs 31:25
This day has seemed so long awaited...ONE YEAR! From the day Emma Kate was diagnosed with nephrotic syndrome, I have looked forward to the day she could celebrate a year free of relapses, and free of medicine. The actual day is January 23. That was when we ended her last dose of steroids, and she has had negative urine every day since. Even through colds, fevers, antibiotics, and sickness.
It was this time last year that she was right in the middle of a relapse. It was then we made the decision to go 100% gluten free and dairy free. We had already cut out "most" of those foods. As I soon learned though, "most" doesn't cut it. That ended up being one of the best decisions we ever made! It was life changing in more than one way, but so well worth the time, effort, and sacrifices.
Emma Kate is now doing so well that her nephrologist said he does not even need to see her back for another year! Quite different from her previous appointment when he spoke of putting her on a medicine year round, to help prevent relapses. :(
It was this time last year that she was right in the middle of a relapse. It was then we made the decision to go 100% gluten free and dairy free. We had already cut out "most" of those foods. As I soon learned though, "most" doesn't cut it. That ended up being one of the best decisions we ever made! It was life changing in more than one way, but so well worth the time, effort, and sacrifices.
Emma Kate is now doing so well that her nephrologist said he does not even need to see her back for another year! Quite different from her previous appointment when he spoke of putting her on a medicine year round, to help prevent relapses. :(
Emma Kate with her fun Doctor, Dr. Greenbaum
This was the happiest visit we ever had with him... All good news!
This is my most favorite supplement. This is what we added this past year, along with Ultra Care for Kids. You just add the powder to a drink (we use chocolate almond milk), mix it well, and you can't even taste it. Why I love it...It's the only supplement, other than pro-biotics, that has actually regulated her bowel movements. If we skip too many days, and she gets constipated, I just give a big dose of this powder and she will be sure to go! It helps to restore the lining of the gut, and having a good strong gut is vital to having good health. I feel pretty strong that this supplement is partly to credit for our stellar year. It can be ordered on amazon. I give Emma Kate a 1/2 scoop every 2-3 days.
Other than that, in new news Emma Kate failed her pre-K eye exam and had to get glasses! We were very surprised, but she has done amazing. And of course, she rocks them...
I am still having to get used to seeing them on her though! Ha!
I can't believe we are about to be celebrating this sweet girl's 5th birthday! It has been almost 2 years now since Emma Kate was diagnosed.
We are now to the point, that most days I forget to test her urine. And I think that is a good thing.
It's a brief update, but I'm very thankful it is! We are so blessed and still thank God every step of the way. It has been one terrific year and we look forward to many, many more!
It's a Wonderful Life!!!
Please contact me. I have nephrotic syndrome and have many questions.
ReplyDeleteXNICHOLASVALDIVIAX@GMAIL.COM
I sent you an email!
ReplyDeleteFor those people who are celiac disease sufferer and maybe reading this, I find it hard that people are still ignorant when it comes to celiac disease.
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Hello. Hope you are doing well and your family is in good health. My 5 year old daughter also was diagnosed with NS when she was 20 months old but I believe the symptoms had started when she was only 15 months when I look back on her timeline. I wanted to understand if gluten free and diary free diet is for long time or only to reduce relapses. If at all after growing up the child has to eat diary or gluten will the immune system be strong enough to take them as we had deprived it for so long. My daughter is on immunosuppressant MMF from 1.5 years without any relapse so far. Please email me on sripriyashankar.17@gmail.com
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