Ashley's Story

She will leave fingerprints all over your heart


I may be...

crazy? bi-polar? Unstable?

Just kidding. Don't commit me. I just find it amazing how the morning can bring such hope, such joy, and such "stability" to my emotions, but by the end of the day I am a mess. I am spent, and lonely, and emotional, and a wreck.

This morning Ashley Kate sits on her new rug(its fabulous! Thank you Mary for picking it up) not ready to actually move across it but definitely interested in getting to the Blue DVD I placed on the other side. She just needs a minute or two to test it out, then I think she may take off. One things for sure a nice, big, pink, flowery rug can turn an old hospital room into a more "homey" place. Add in the scent of Hawaiin Breezes and some Classical Christmas and "poof" it makes the day a whole lot brighter. So you see? I may be a little off if the little things in life like rugs and scents can change my whole perspective. I'm doing my best to make her life more comfortable. To surround her with as many comforts of "home" that I can and I don't know for sure if it makes a difference, but it seems to. Her own p.j.s, soft blankets, sheets, toys, Blue, and now a rug very similar to the one she plays on at home. Some think I'm crazy and so I've just decided to embrace that thought and keep being the best mom to my kids that I can possibly be. If I could figure out a way to bottle her brother, her sister, and dad up and pack them in her bag I would do that to.

Anyway, we slept hard. We slept all night. Ash didn't move a muscle all night long. Sleep is such a gift. It can turn a weary soul into a hopeful one. Ash is definitely not herself, but she is stable. She is breathing well. She is beautiful. Not smiley, happy, and silly, but stable. I'll take that over the places we have been in her life time any day. I don't know what this rejection episode has in store for her, but at this time we are "ok".

I wish I could see inside of her and know if the treatment has done any good. Her bowel is angry and I know that because I can hear it. I can also tell in the way she reacts each time I go to change her diaper or empty her ostomy. Its obvious that she is uncomfortable. Her stomach also seem to be upset a lot. She is not vomiting, but I can tell she is fighting it back. I wonder if the steroid is causing that or if its the rejection?

Yesterday I learned something new. It seems I'm always learning new things about transplant life. Even after living if for 2 years. They asked me if Ashley had had an ear infection lately? What in the world does that have to do with anything? It seems that battling something as "simple" as a bad ear infection can cause the bowel transplant patients to reject the organ. Amazing! Well, she hasn't had an ear infection, but the whole premise behind that statement is that anytime their body has to fight off or defend itself against an illness it ramps their immune systems into over drive and in the process sends them into rejection. Their is no common child hood illness for these kiddos. Anything and everything can send their bodies into rejection. That in itself is enough to make me crazy!

Today should be quiet. No infusions going into her. No tests. No meds. Just me and Ash playing on our new rug and looking to get day number 3 under our belts.


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