A Little Bit Stronger
Each day we watch as Ash's body gets just a little bit stronger than the last. She's making progress. Its slow, but steady.
The little things I've noticed are things like: turning the light switches off for me as we leave a room, Sitting on the edge of her bed a little longer each day, Laying herself back on her pillows and covering herself with a blanket, Holding her Ipad in one hand again, reaching for objects in front of her, etc. She has yet to begin moving on her own, but I think it may just be a matter of a little more time before she does.
Yesterday was the first day in 3 weeks that she left the bed. I asked her if she would like to go into the play room and she told me, "no, no, no". I didn't listen. I feel like I need to push her just a little bit each day and she'd been in bed for 21 days in a row. I promised her she didn't have to play, but told her I would like for her to get out of her bed. At first she looked confused, unhappy, and maybe a little frightened, but it didn't take long for her to settle in for the afternoon. She didn't ask to play with anything, but she did point to a few different items and showed some interest. She stayed in the playroom for the rest of the day, even napping in there for the afternoon. Last night she began to play just a little with her farm animals and even though the energy and excitement I'm used to seeing from her wasn't there, we were encouraged by her play. By bedtime she was totally exhausted and worn out.
Basic cares wear her out. We changed dressings last night and will shampoo her tonight. I'm trying to stretch out what I would normally have done all at the same time so she doesn't get too tired. Its going to take a little while for her to get strong again. Her body took a massive insult with this last infection and her muscles became weak. She tires easily from activity, but I don't think this will be forever. Its only a temporary setback. I'm seeing more life, and more activity in her eyes every single day.
She laughs a little bit more each day and we have seen several smiles throughout our interactions with her. She is tiny and frail in comparison to what she had been, but her spirit is so, so sweet. We take her on her drives each evening and she seems most happy when the world is passing by her window. We hear more laughter and more joy from her in these moments than most others. She loves to be on the go.
This afternoon we opened up the doors to the house and allowed the smells and the sounds of the rain to come in. She didn't want to go out in it, but was content enough to listen to the sounds from the playroom. I'll know she's really feeling better when she starts requesting to go back out into it. Rain is one of her very favorite things.
Its taken a few days ,but I think I'm finally feeling rested and renewed. Last week was brutal. Emotionally, physically, and spiritually. It was just so hard. I don't have words to even describe how exhausting the emotional drain on my heart has been. This time at home has been good for both Ash and myself. She needed to come home, and I needed to bring her home. I can feel the relieving of burdens on the hearts of the kids. The big picture hasn't changed, but our today is easier to manage from inside our home where we all begin and end the days together.
I did have a short conversation with transplant this afternoon, but nothing serious was discussed. They were just touching base, checking on her, and letting us know they were there if and when we were ready to take her back to Omaha. Honestly, I'm not ready to think about or discuss anything yet. We need some time at home to adjust to all the new information we were bombarded with last week. Long talks, weighing pros and cons, and looking at all sides of the decision are in our near future, but not today. We just can't go there again today.
I want to thank each of you for praying for Ashley Kate and for our family. I am so humbled by your words of encouragement and so appreciative of the time you spend here with us. I simply don't have the ability to express how very much you all mean to us.
Several people have asked or emailed me about the new t-shirts that are being designed for Ash. The design was created by one of Ashley's friends. I love it! If you are interested you can order them by emailing Rachel at firstname.lastname@example.org. She will be happy to help you get one.