Just wanted to share a few images from the last two days with you. Yesterday Ash received yet another blood transfusion. I've lost count how many she's required the last 3 weeks. All I know is that I am so very thankful for all the O+ donors out there. Your saving her life.
Allie saying goodbye to Ash this afternoon before they headed out on the road. Get ready Oklahoma she's coming to town for the next couple of weeks.
This has to be one of my favorite images of all time. My sweet girls. They are both so beautiful.
Ash sitting up today after having her hair washed. Its getting so thin from lying on it for so many hours a day. I wash it every 3 days(would love to do it everyday, but its impossible to put her through the process that often at this time). We got it dried and braided in an attempt to keep it from matting so much and hoping to save it from falling out with each brushing. As you can tell it hurts to be her today. Ashley Kate is normally a very petite 15 kilos. Today she weighed in at 19.2 kilos. That is 42.24 lbs! Quite a jump for her 33lb body. At this weight it is impossible for her to move on her own. She can't turn over in the bed. Which is why her hair is matting and falling out. She can't sit up on her own and barely with assistance. She can't stand. Can't take steps. I don't know how they are going to get it pulled off of her, but this extra weight combined with a very distended tummy is making her even more miserable.
I think I miss her smile more than anything. Her laugh runs a close second. The sparkle in her eyes definitely. I just miss playing with my girl. At this time our entire interaction is giving comfort, and tending to her medical needs. Oh, how I miss our Ashley!
The address I listed seems to be working sometimes and not working others. I'm not sure what to say about that. Teresa, I have received a package and beautiful cards from you on several occasions so I don't know why some are being returned and others are not. Just know that I appreciate your thoughtfulness and your prayers so very much. I don't have another address that can be used. Perhaps trying to begin with Nebraska Medical Center instead of Ashley Adams might help? I really don't know. I'm getting mail both ways.
Ash and I are spending a quiet evening here in the PICU. Just trying to figure out this new "old" life of ours again. Take care. Trish