Thankful to be on a hill climbing up on this seemingly never ending roller coaster!!! Today was a good day - YAY!!!! Kaitlyn had successful PT and OT appointments!!! She was able to stand and take some steps with a walker. It will be no time before she is running circles around the PT staff. She has that fight back!!!! She received dialysis today and because of her success in that area, they are holding off removing the PermaCath now that they have flushed it, to see if she needs to continue the Dialysis. She has made great strides in getting her kidneys back to functioning properly. (DOUBLE YAY!!!). More blood test, another heart scan, respiratory visits every 3 hours - just the normal busy life of an HLH patient. We did get the good news that her version of this disease is NOT familia (hereditary)!!!! Her oncologist was even pleased with some of the improving blood test and organ recovery!!!! Major high for us!!!! She was nauseous several times today, but the doctors are right on that with medicines. We know we will have more small setbacks, but dont put your hands up for the ride downhill - we are enjoying this high a little too much!!! Thanks for all of the prayers and thoughtful gestures - we truly believe all of the prayers are getting us where we are today!! PRAY ON!!
Posted on: Wed, 09 Jul 2014 05:56:07 +0000
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