"She's still here."

This morning Dave and I were working together as we prepared Ash for the day. Things like meds, feeding pumps, ostomy bags in addition to the normal diaper changing and dressing can make it enough work for more than one person. She smiled and giggled at us as we sang our good morning song(its quite original) and greeted her. Then Dave said, " Sometimes I look over at her and I think to myself "I cant believe she's still here with us". Do you ever think about that? She's still our little pickle and she made it." I just nodded my head yes. I really have thought the exact same thing. On several occasions and sometimes several times a day. I am amazed that shes still here.

In fact, I had that exact thought first thing this morning as I looked at her. I had a very restless night. Filled with nightmares that involved Ashley Kate. Before her transplant I struggled with lots of nightmares. I would be afraid to close my eyes each night because I knew that somewhere in the night I would battle images of losing her. Its been a long time since I've had to struggle with thoughts like that, but for some reason the images of loss were all to real and I woke searching her crib making sure she was still there.

Things have been going well. I sat in the living room visiting with my mom last night and announced how much I love being home. I do. It feels so right to be sitting around the table, making dinner, folding laundry, attending ball games, sitting in carpool lines, etc. I love the normal everyday things that take place in our lives. Ashley Kate is so happy. She has learned many new things. Her favorite new things is playing catch. She will play with anyone. She is so proud each time she chunks something across the room. One of her other new favorites is rolling the ball. We use her big therapy ball that is actually too tall for her to see over, but she loves to push it across the floor to one of us. You should see the smile that comes across her face! She has also begun to roll from side to side. This is actually a big one to us. For the past two years Ash has used NO rotation of her trunk. So to see her twist from side to side on the floor is actually a lot of progress. This morning she had turned herself completely around in her crib from were I tucked her in last night. We are very encouraged by this. At last she is starting to try and get somewhere other than where we place her. She still has no tolerance for being on her tummy. Within in seconds of placing her there to work on therapy or new skills she begins screaming and flips her self over to her back. She has never gone from her back to her front, but with the new side to side rolling I can't help but think it is someday going to come to her. She is still as stubborn and ornery as ever and we are still hoping to turn those behaviours into something that will assist her.

We start therapy again this week. Hopefully with Ms. Sue(if we can get on her schedule) and also with a new occupational therapist for feeding therapy. Ashley has lost ALL interest in eating and drinking. We can't seem to persuade her to open that little mouth for anything. We will more than likely be battling this issue for many years to come. She still has a nasty cold. It sure is persistent. So each morning we cough and sneeze and gag for a few hours. Then through the day she sneezes and her nose runs a lot. At night the coughing and gagging begin again. I don't know how long she will have it, but as long as she stays fever free and her lungs stay clear she should be alright.

We are so thankful for Ashley Kate as well as many other things in our lives. She brings such joy and happiness to our home. Just looking at her makes us smile. I couldn't imagine things being much better for us than they are right now. God is faithful and loving. He blesses us again and again. Ash is still here and her daddy and I are still amazed by the God we serve. Take care guys and have a great weekend. Trish