Just Being Me

and pretty happy about it.

She doesn't talk. She doesn't walk. She doesn't eat. She doesn't know everybody thinks she should. Ashley Kate is a happy little girl and has been really busy lately. She's much to busy to pay attention to what she can't do and where she is. She has things to do. Things like signing, reading and playing "abc's". I think we forgot to let her know that she's supposed to be sick or something. Each day she wakes smiling and happy. Ready to get out of that silly bed and down on the floor where the fun can begin. She spends her days learning more and more signs, reading more and more books, and playing more and more things. Her smile lights up this room and her giggles are contagious.

I'm so proud of this little pickle. She has grown up so much this year. She no longer cries each day when the surgeon's come in for rounds. She might look up at them when they are talking, but mostly she just ignores them and keeps on playing. A couple of days ago she looked at the surgeon and signed "hurt" and "cry" as she communicated to her that her tummy was having a cramp. The surgeon looked confused until I explained that her tummy hurt and it makes her cry. Then she nodded and said, "I'm sorry baby." I'm pretty sure they don't know what to make of her. She can't talk to them(and most of them don't even realize that about her) she's never running around the room when they come in( and I'm pretty sure they don't realize that she can't stand up either). To tell you the truth one surgeon asked me before Christmas if I made sure that I hung her ornaments high enough off the ground so that she couldn't reach them and pull them down when she stood up. Hmmm, I thought to myself. They really and truly have no idea who she is and how wonderful this child is. I was in the elevator yesterday and one of the PT's said to me, "I heard she is walking now. That's really great." I just shook my head back and forth and said, "Nope she doesn't walk yet, and she hasn't stood up since October, but she's still pretty awesome." Then it was time for us to get off the elevator and we went separate ways. I wondered who started that wonderful rumor about her?

Anyway, she looks great(don't you agree?), but her output is not so great. She is on 20mls of feedings(goal being 80) and 35mls of TPN per hour for 24 hours. She is so tiny and seems to get smaller every day. I think she's lost a total of 4 pounds since this whole episode of rejection began in early October. She has no meat on her and no muscle. She is light as a feather and about as petite as she can possibly be. This is one of the things that concern Dave and I the most. Her bowel is just not absorbing enough nutrition at this time to maintain her normal weight much less help her grow. We are hoping it is going to improve once it heals again. I have no intention on being discharged without TPN(even though I hate it because of the damage it can do to her liver). I am convinced that she needs those extra calories(at least for now). We would really like to convince the team to allow us to stop the use of Rapamune for the next few weeks and give her bowel a chance to heal up. Then once it is healed and absorbing well again we would be willing to add it back into her immunosuppression regime. Unfortunately, I don't think I'll get anywhere this week with the surgeon who happens to be on service so this idea may have to wait until next week. I will discuss it with our NP on Monday and hope she can get somewhere with the idea. The Rapamune is making it very difficult for her to heal. It also is the cause of ulceration and high stool output. Dave and I would love to give her body a chance to repair itself and then use this drug once it has rehabbed a little more. Anyway, just something we are praying about this week.

Outside of this damage in her bowel our baby gherkin is terrific. She isn't uncomfortable. Isn't really sick. Isn't anything other than happy. The thing about healing is that it just takes time and nothing can be done to speed it up. She can heal slowly in Nebraska. She can heal slowly in Texas. Guess where we would like to be doing it? Maybe someday soon.

Its been a good day for us here. We have played and rocked and sang and signed. We even had a long nap. I love being her mom and wouldn't trade our time together for anything. Even if much of it has been spent here in Omaha as of late. Ash is a gift. She is tiny and beautiful and sweet and amazing and I love her so very much. I sit and hold her and thank God for this child who entered our lives 3 years ago. I can't remember who I was before she came and I can't imagine who I would be without her. Her daddy misses her so much and I know I couldn't trade places with him. A day without Ash just isn't a good day. My goodness we are surely blessed and I am so grateful to be her mom.

Thank you so much for being here with us, again. I know your exhausted by the ups and downs. Your faithfulness to pray for our family is never taken for granted and I want to thank you from the bottom of my heart. Thank you for loving her and for loving Him enough to open your hearts to our sweet girl. I also want to thank you for praying for so many of our friends. We appealed to you for sweet baby Lauren, for our dear friend Kylie, and now for Emerson. You have not let us down. How will I ever repay you for your kindness towards us and those that we love? You humble me and I thank God for our readers and our prayer team. You guys are amazing. Thank you again and good night. Trish