I realize I have not updated in a couple of nights. It has been quite the few days. Ryleigh’s recovery has not been typical and we are slowly helping her get better.
Ryleigh continues to have a great team behind her. The surgeons and pain management doctors are on the same page now and are realizing that she has complex pain issues. Ryleigh turned a bit of a corner last night — she asked for her ipad and used it for a couple of hours. She slept a bit more last night. This morning she had a sponge bath but all the movement made her even more sore.
Ryleigh has been through a lot and as a result this makes recovery even more complicated. Her chronic pain and acute pain issues are challenging to manage for her, myself, and her team. Along with the pain are her worries about something else going wrong as she has had so many things happen to her. The anxiety she feels is contributing to her pain. She feels like she has no control over anything so we have to find the fine balance between pushing her to do the work needed to recover and letting her have some control over what is happening to her body.
Children are much different then adults when it comes to recovery. They do not always understand what is needed and feel like their whole sense of self is being altered with. This is why we are going slow — many children would be walking around by now but she will just take more time. We are not in a hurry and not rushing to finish this.
This process continues to be challenging on those who love and care for Ryleigh. I know I have had some moments of wondering why this is happening and feeling a bit overwhelmed. I have to remove myself from my feelings and realize that it is about what Ryleigh needs right now. She is going through this and I have to do whatever it takes to make her recovery successful. I am concerned about her sense of self and feelings about things – she is sad and upset. But time will heal..