Ammonia was holding steady at 36 yesterday. We spent our first night as a family, just the three of us (and the girls), by ourselves in the house on Sunday night. It was definitely scary to be alone and we started freaking out a little around bed time. She hadn’t eaten as much and was making these little sighs. After contemplating taking her to the emergency room we decided that we were just stressing and that we would wait and see how she was at her next feeding. She was absolutely fine, crying loud, wide awake and eating very well. I am sure that will not be the last time we are freaking out when she is perfectly fine.
We go back to the clinic on Friday to have it checked again. I also spoke with the transplant coordinator from Georgetown today. She said they are going to present Ryman to the UNOS (United Network for Organ Sharing) committee next Thursday to get her on the transplant list.
Our kitchen has become a pharmacy/chemistry room. I pre measured a 6 day supply of the ingredients for the special formula she is having.