She's stable so why mess with her? Day +14

My post will be short and sweet, maybe. Beck is taking a day off from blogging (except for adding pics).  Elle is stable. That has become a very good word around here for everyone. Make no mistake though that our little girl is very sick. The docs keep reminding me of that every morning. I guess I have gotten numb to her condition and it has been normal for us, she has always been deteriorating in our hands. How does one keep doing more and more each passing day and having less and less results? (skin care)

My title states why mess with her? Today is a big day around here. Circuit change on the Prisma (dialysis machine). All these machines are numbered and ours is #5. I call him Johnny Five. Some of you will understand and others well your too young maybe. So there it is Johnny Five needs some attention. He has been doing a good job and has been steady as a surgeons hand. All good. Going back on dialysis is always tricky, her one time on about three days ago was a rough go, but everyone in the room (docs,nurses) were so calm on her 1st attempt that I did not even realize that her road was bumpy. Shows you how good they are and how thankful I am.

I have also realized how little control I have. I have always advocated for her and still will always be her voice. I do not need to be loud anymore I  just leave it all in gods hands and he is her advocate, her strength, her surgeon, her nurse, doctor, and  so much more. My little Elle has showed us courage beyond words. Smiling through the pain, fighting through the impossible, and working towards a miracle.

With her new "Elle"phant from Grandma Etelca

Under the Bair Hugger to keep her warm

Her room is shrinking

                                  

Her nurse, Ashley organized all of her pumps yesterday- now just on one pole!

Here is the Prisma or as Stefan calls it,  Johnnie 5

Her heart shaped dressing "I love my Nurses"

She is our miracle and will always be.

The BMTdoctor just left here and he stated that she is not just stable he has upgraded her to improving. YYYYYYYYYYAAAAY. Little step from yesterday, and he said very little, but still a win for Elle.

 I guess I was going to keep this short, but now I am excited again so maybe not. My mom is here to help so that is a relief. We miss being back home in California. I really miss work if you can believe that.