Sunday, October 27, 2013

Making changes

It's been recently brought to my attention that this blog has been a resource for many other families with children that are born with congenital nephrotic syndrome.  I've been contacted via phone, by email, and even at my office.  I'm always happy to share our experiences with other families.  I know when our family started this journey I often felt very alone and felt like I had no where to turn.  I found a few blogs with status reports on other children, and a lot of information on google, medscape, webmd, etc that  was VERY scary.

The idea of having a child that was going to have to have a nephrectomy, be on dialysis and need a transplant and likely multiple transplants during his life time, was extremely devistating news to me.  Not to say that it's still not devastating but frankly we're used to this routine now, used to hospital life, and used to the idea that this will be a lifelong journey.  So, with that I would love to lend a hand or an ear to others, to answer a quick question of "have you experienced this?" Or anything I can possibly do to help I'm not proclaiming to be an expert or a doctor, just a mom that's learned the ropes by default.  I've had a wonderful support system (including Tyler my husband, our families, co workers that have covered for us, friends that have fundraised for us, cooked meals for us, visited us, taken us on the lake to get our rears out of the house, etc.) My point is that we couldn't do this alone, and I thank everyone for all that they have done.  I only hope that someday I can be as gracious and generous as our support system has been to us.  Don't take this journey alone. I welcome the conversation so feel free to call, email, or send a message via Facebook.  The Facebook group is here:

I don't blog often, and if feel guilty when I don't, but I seem to sit and stew about things to get off my chest and when talking to Preston's nephrologist and telling him that I'm contacted all the time by other parents, he asked if they contact me regarding congenital nephrotic syndrome or about peritoneal dialysis and/or transplant.  So far my conversations have mostly been CNS related and I think that's because that's the stage we have been at with Preston, sot hats mostly what my blog has been about.  So, after giving some thought, I decided to make a change to the title of this blog.  "Living with Congenital Neohrotic Syndrome" was what we we're doing.  But guess what?  Preston's had his nephrectomy and is no longer Neohrotic, so he now has a History of having CNS.  That's right, we have polished off one chapter of this novel.  So the next/current chapter: Peritoneal Dialysis, The next chapter after that: Transplant.  So knowing this blog has not only helped me vent, my family and friends know where we are and what we're doing (especially since we haven't seen so many of y'all in so long), and also helped other families undergoing the same experiences, I've decided to include in the title all three topics 1) CNS 2) PD and 3) Transplant.  

Here's to hoping that you may now be able to Google any of the chapters along the way to kidney transplant and be able to find this blog helpful in your passage.