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Aug 20, 2018
Mommy and Daddy are helping me type you all a message hhhhrkykr dlgjlel glfghhhh bbbbdddd jgjdksl (translation- thanks for my cards and messages and prayers.) Daddy says get me out of here fast! For all of you who offered us help- thanks and read on to see how. ( Written back in 2007 when we first started this journey!)First written back in September of 2007 when we first started this journey! LOTS HAS CHANGED NOW- read the journals to find out how! We need bottled water, hand sanitizer ( my immune system is really low), gas crads ( mommy and daddy have to drive back and forth lots and will continue to after this) and grocery cards ( I have to have a special diet).Caffeine!!!!!!!!!!!!mommy and daddy are tired. And of course your continued thoughts and prayers! Thank you! Love- The Koesters
Emily was diagnosed with a treatable kidney disease called Nephrotic Minimal Change Syndrome back at the beginning of August. As many of our friends and family know she has been taking steroids and diuretics to help treat her systems of this disease since her diagnosis. Emily is now on her third hospitalization at Children's Hospital in Omaha to help relieve some of the edema (fluid build up) that has occured. Essentially she has gained a lot of "water" weight on her little frame and her kidneys suck up the protein that her blood should be using; therefore her immune system is extremely low. She also has high blood pressure and is on two medications to help bring it down because her heart has to work overtime. Joe and I have had her at Children's since last Friday (September 14th) and we are not sure when she will get out yet. She did get a temporary line put in her collar bone area since she has IV's with medication and blood taken every day and she doesn't have to get "pokies" everyday now. She also had a kidney biopsy done on this past Tuesday to see if the specialists are missing anything in their diagnosis and/or see what other medications might help her more. That's where we are at now. More details to come.