Ashley's Story

She will leave fingerprints all over your heart

2/06/2009

Better than Ever

Today she did better than she ever has! Ash had therapy and she looked better than ever. After the rough fall and winter she's had we never expected her to do this on her first day back,



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but she did! If you watch closely in the first minute or two you will see her dance just a little when the music comes on. If you keep an eye on her you'll then see her start to grin just a little here and there. Finally she signs the word stars when she sees them on her episode of Blue. We missed the sign at first because she was a little off the first time. Once we looked up at the screen we knew exactly what she was signing. She's usually right on with this sign which is why we were a little confused but she knew what she saw and what she was signing. I'm SO,SO PROUD of this baby!

Ash has been so weak and shaky the last few months we had no idea she could stand this well. She has been wearing her immobilizers for about a half hour each day and playing in the toy chest. I guess it helped her strengthen those tiny legs. Our hearts ARE encouraged. Probably more than they have ever been. We have been praying each night as a family for her to gain the ability to walk and talk. I really believe its going to happen for her someday. Maybe even this year!

She looks so good. The last two days have been her best in months and months. Her bowel is still not as healthy as it was last summer and I don't know that it ever will be. Her stool output remains way too high and she continues to be on TPN support. I'm not sure how long her liver will hold out, but for now she is not on any lipid support. It is our firm belief that the lipids are what cause the damage to the liver. If she needs TPN support for a few more months then I think that as long as we keep her off of the lipids(the fat) then she may be ok. She began eating small amounts of baby food this week. A jar or two each day. Not much, but at least its something. Our hope is to get her back to eating between 500-600 calories by mouth and only have her on the feeding pump overnight. We have a long way to go, but she is proving to us that she can handle more and more each day.

My heart is so grateful. So very grateful for this tiny life that has been placed in our hands, our home, and our hearts. I love her more than I ever knew I could love anyone. She is precious. So very precious to us. Each day I fall more in love with her than the last. We are so blessed. The hard days, the long nights, the broken pieces of our hearts seem to disappear as I hold her close to my heart each and every night before bed. I rock her and she cuddles in close to me. Its an amazing life. A gift. One that I will never take for granted. Oh, how I love this child of mine!

A couple more question that have been asked today.

" Why doesn't Ashley talk?"

We don't really know for sure. The best guess is that she may have suffered from a brief lack of oxygen to her brain while they were working on her through her code. Her heart rate plummeted while they were attempting to tap the pericardial effusion(fluid around her heart in the pericardial sac. That is the sac that holds the heart.) that had developed. We were told it was an emergent procedure that could not wait to be scheduled in the OR. It had to be done immediately at the bedside and we were assured that there was a less than 5% chance of complication. At some point as the cardiologist inserted the needle to drain the fluid she went into cardiac arrest and a code was called. They performed CPR for 10 minutes as they worked to re-establish her heart rate. It was the single worst day of my life. I thought that we had lost her and they could not assure me that we had not. Ashley was saying, "my momma, my momma" in my lap minutes before the procedure and has not spoken since that time. Although the transplant team has never discussed or acknowledged this day with us, I was there and I witnessed it. They saved her life that day. Amazing nurses came to her rescue and doctors whom I had never met worked as quickly as possible to keep her breathing. 2 years later we have her with us and we work each and every day to learn to communicate with her.

"Why don't we publish any of our comments?"

Well, its a long story. After much struggle it became necessary for Dave and I to make our comments section private. We opened Ashely's story and our hearts to this world through this journal and although the majority of those who read it are amazing, loving, supportive people there are a select few who seemed to take great satisfaction in turning it into something ugly. We were forced to remove the public forum and make it impossible to send us an anonymous comment. Its worked out well. We may have lost a few commenters along the way, but since this time last year(it will be a year at the end of this month) we have still received around 8000 comments. Many people prefer the privacy and have felt the freedom to share more of their lives and their situations with us since that time. Every once in a while I think a comment or two gets lost along the way, but most of them come through to us.

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