She has good days...
...and bad. I'm learning not to count on one or the other at any given moment in time. Some days are wonderful. Like Tuesday. The weather was so beautiful and she looked so amazing she and I took her Amtryke out for a "walk". Well...to be truthful she rode and I walked. She of course can't pedal it herself, but she enjoyed being outside so very much. The moments were precious. Ones I will treasure in my heart forever.
Today? Not a good day. She's sick. Not right. We are concerned. More so than on a normal day. Yesterday we were at her doctors appointments in Shreveport and all was well. Labs ok. Liver is very ill, but the rest of them were all stable. Then today she has felt awful. Lots of vomiting. She vomits every single day, but tonight or actually just moments ago so I guess its now morning she got so sick. Luckily I was holding her up to my chest. Had she been sleeping or lying down it would have been extremely dangerous. No one really knows why she vomits so much. We thought perhaps a side effect from the many narcotics, but she is basically weaned from all but one and the incidents have increased rather than decreased. Its something we've experienced in her life before, but it is "new" again too. She spiked a fever for about an hour this evening, then it disappeared. She got very, very fussy. Still is. I guess what I'm saying is...her line...the hepatic one... the last one...has us frightened. If its infected we could potentially be in for a lot of trouble. I'm hoping since the fever was very low and lasted such a short period of time that its nothing to do with her line, but you have to check. In a child like Ashley Kate you have no choice but to find out. I almost wish we could ignore it because if something is wrong I really don't want to know. I just want to raise my daughter and stop living with the cloud of " not growing up" hanging over my head. I want to pretend that the world is right and our five year old is fine. I want to forget about transplants, and survival, and infections, and scary stuff. Unfortunately that is not the way life works. Especially in the situation we are living in. So...blood cultures...and we wait.
Outside of learning how to live in this new place we now reside, life is...ok. Overwhelming at times. Frightening at others. Blessed most of it. How can I feel so blessed when I know she's slipping closer and closer from us the longer we have to wait for new organs? I can't explain it. I guess its just that when I look on her face, and on the faces of her big brother and sister, and hold onto the hand of her daddy that I can't help but feel like I've been blessed more than most. Life is painful, but its also beautiful. Like bike rides on lovely fall afternoons with the most beautiful five year old girl around.
The blog design? Well...from what I can tell a lot of other blogs designed by the same designer
(years ago) are experiencing the exact same problems. Something expired or whatever. So...all we have had time to do was a hit a button and pull back up our original from the first few weeks we began journaling. It has lots of stuff that needs to be removed, but Dave didn't have time to figure out how.( We know the original web site listed doesn't exist anymore(well, it actually does in some archive that I have the address written down in some drawer in the kitchen). We also realize the hospital address is on there. Don't send anything there, we won't get it right now.) I don't really want to spend time figuring it out and so someday we may take someone up on the offer to help or we may figure something simple out on our own or we may do nothing. I just don't know yet. For those of you who said don't worry about it you aren't here for the blog design but instead for the content then I just wanted to say thank you for that. No pressure. That's what I need at this point in my life. I of course preferred the sweet picture of our Ashley's tiny hand in her daddy's the morning after transplant, but its gone for now. For now its pink, and plain, and boring, but its still ours.