It seems to be the new word in our house lately.
Ashley Kate is 5 and 1/2 years old. She is 43" tall and now weighs, thanks to her new life on TPN, 40lbs. When combining that 40lbs. with those loooong legs it makes lifting her, carrying her, and moving her several times a day very, very difficult. Its getting harder and harder the older she gets. So our new normal is transfer.
First thing each morning after playing with her dino in the bed as I ready her clothes and supplies she points to the corner of the room where her chair sits. When she's ready, she lets me know by signing for her chair. I sit her on the edge of her bed, dress her, pull back her remaining hair, and then say " are you ready? We are going to transfer." I move her long legs over to that chair and then away we go to the play room.
I'm thankful for the chairs that she has. Very thankful, but at the same time I so desperately wish that she could stand, take steps, and walk toward that playroom. Every morning I am reminded of her loss and I want so much to give to her the independence that other 5 year olds have. I just know that someday, some how she is going to be able to walk. I don't care if she uses her walker for assistance. I just want her to be able to walk. To assist. To move herself.
Last summer, before her ex-plant she was able to help us stand her up, push with her legs or hand on to our hands and take steps to the play room. I can't tell you how much easier it was to get her from point a to point b with that little bit of assistance. It made all the difference in the world. It really did. She was only 33lbs at that time.
The extra 7lbs she now has on her body since beginning full TPN in July is making it harder and harder to move her. The extra ___ lbs I have on my body over the last 5 years of her life is making it harder and harder on me to move her. I'm trying to lose some weight and become stronger because I have to be able to take care of Ash. I do it 99%of the time by myself and its getting harder and harder to do the older she gets.
So we continue to adjust to our new normal. In ways that so many people never even think about. The ex-plant and illness that Ash endured this past year has taken more than her bowel from her. It has taken so much more. I hope she can regain some of her accomplishments before we go back to transplant. I hope that some day she will be up and moving on her own two feet again. I really do.