Not Herself

She's just not herself with all the medication she has been treated with. Its such an unfair situation. Each morning I listen to comments about her personality and how disagreeable she is. It breaks my heart because they really and truly have no idea how amazing and precious this little girl is. No, she doesn't laugh and play while we are here. She doesn't want to be here. Each time she is here she is sick, hurt, stuck, poked, operated on, and all the rest. She doesn't really appreciate it when people come in to speak to her because she isn't sure what they are going to do to her. It is really very sad that they don't have an opportunity to know our Ashley as we do. This morning I responded to a comment with, "She really isn't like this. She is a happy, silly, little girl who loves life."

"Yeah, right." was the answer. "Somehow I just don't believe that."

Ouch. That's all I can say. You don't love her therefore you don't know her. If you did you would see the miracle that she is. I'm sad that they are missing out and hurt that they believe she is so awful. They have no idea how great our little girl is.

I will be the first to admit that the past couple of days have been difficult. When Ash is slammed with such high doses of treatment it alters her personality. She is angry, confused, irritable, and not happy, BUT none of this is her fault. She did not choose this for herself, and if you ask anyone who has ever been on this medication they will tell you how out of control it makes you feel. Just imagine feeling that way and not having the ability to speak and be heard. It is a miserable experience for her.

Oh, well its their loss. It really and truly is because Ashley Kate is something special and if you've missed out on that then I am truly sorry.

Her scope has been pushed back. Her potassium has had a severe drop in the last few days and before she can be placed on anesthesia she has to receive an infusion. It will take about 3 hours and it has just been started. So I assume she will go down sometime around 3-4. Hospital time is a little slower than real time. Based on the results she may or may not be allowed to eat a little bit tomorrow. If she is allowed then I will need to find someone to make a Target run for me to purchase her food. Its the only place I know of that carries organic baby food. My fingers are crossed that this will be the case.

Yesterday the surgeons(there are 4 of them) met and discussed Ashley's immuno levels. It is obvious to every one that lowering her Prograf rate to safe amounts for her kidneys puts her grafts in jeopardy. They have decided she needs to be on a combination of meds. The one they like to use causes Ash to vomit. She did that daily for 4 straight months and ultimately was airflighted here to Omaha on a ventilator because of aspiration pneumonia. That drug will not be an option. We have a back up in mind, but I have no idea what the side effects of it will be and how she will tolerate it. I believe we will be starting today. As always one thing helps in an area but hurts in others. Its an ugly cycle when you start adding this drug and that drug. Our bodies were not created to function with levels of drug in them so everything has a chain reaction to what we put in her. I'm just hopeful we will be able to manage and give her quality of life.

Other than being extremely irritable and thirsty(she can't have anything until after her procedure) she looks good. Really puffy and swollen, but her lungs remain clear and for this I am so grateful. The first thing to go when Ashley is ill is her ability to breathe. So far so good.

Our hope is that her biopsy will yield great results and that we may have caught her rejection early enough to avoid a long stay. I know it may not be realistic, but I can't keep from hoping. I miss home terribly and she does too. I really, really wish we there and not here. That little yellow house brings such happiness and peace to our hearts when we are all under its roof together.