This day last year Ryman had just turned 101 days old. Man, I use to count every single day. I think being home and in our normal old routines make it easy to forget how important each day is. We have been so blessed that Ryman hasn’t had to be admitted in so long. Its hard to even think about where we were last year at this time. Jeremy was getting his work up to see if he could be a living donor for Ryman. We were continually battling ammonia levels in the 90’s and we didn’t know if she would get a liver before we weren’t able to control it at all. I say in my car outside my house for a while tonight. Trying to bring myself to go inside. It will be the first time in so long that I will be here without Jeremy or Ryman. I’m use to Jeremy being gone with work but Ryman is always with me at night. Jeremy’s mom says she went to sleep shortly after I left so that helped. I need some sleep so I can be there for her fully. She is eating great today and some numbers improved and some continued to rise but overall they are pretty confident that the steroids are working. I think they are still trying to find out exactly what’s going on. Georgetown ordered some more labs, some special ones. My thought is that Ryman has something viral and that is the culprit of this all. She vomited twice yesterday but was able to keep food and liquids down today. When she gets a virus we always run the risk of this happening so it wasn’t a surprise to the doctors. We were a little surprised but only because we were just sailing along so well. We knew it would happen sooner or later but just weren’t living in fear of it happening. Since she is back on steroids and we are going to be keeping her prograf level high we are going to be those parents who ask a million times if anyone has been or does feel sick. And of course you’ll have to use hand sanitizer if you think you might touch Rye. The difference between us being sick and she being sick is basically our livers. Our immune system spots the virus and fights it, w will sit the virus and fight it but will always run the risk of spotting her liver as well. That’s the story here we believe, but will hopefully find out more in the coming days. The plan as of right now is 3 days of IV steroids and up her prograf (anti-rejection) medication. We will start to decrease them after day 3 and watch her numbers. Right now we are only doing labs daily. They have started watching her blood pressure and sugar as well with all if the extremely high doses of steroids. She is not a happy camper and some steroid rage. We remember this from the morning Jeremy just took rye out to the car and we left for labs super early because we were afraid she was keeping Julie and Corey awake. She is happy then sad, has energy and can barely hold her eyes open and loves to just scream. Many restless night ahead, say a little prayer for that she can be some actual rest.
Thank you for your love and prayers.
Don’t overlook the obvious here, friends. With God, one day is as good as a thousand years, a thousand years as a day.