I cant believe we have past 50 days! Ryman has been a breathing (well excluding two little incidents) human for longer than I’ve ever stuck to any diet or exercise routine. She has also caused me way more fatigue and exhaustion than either of those things. Completely worth ever hour of sleep lost though. I do have some amazing friends and family though. Huge thanks to everyone who have allowed me to grab some sleep and showers. Those two things make you feel like a new person.
Yesterday we went to get Ryman’s ammonia checked again. It was 57 and her blood count is still a little low. Anything under 80 is our goal so 57 is getting to close to that. Prayers for lower numbers. Two sticks in the scalp this time, she was so not happy about that. I tried holding her for the first one but she is so strong that I couldn’t hold her head still. For the second I opted to let the nurse hold her head while I warmed up her bottle and tried not to pay attention to what was going on. Each time it gets harder and harder. When they put the rubber band on her head I feel like she knows what it about to happen. It makes my heart ache.
We changed her formula yesterday as well so I am hoping that doesn’t cause her numbers to increase.
As each day goes by we get closer to Ryman getting her new liver. She was 7 lbs 12 oz at her appointment so she is gaining weight. 6 lbs 4oz away from her goal weight. They said she is cruising along at the 3rd percentile. She is tiny. Also as each day goes by I not only pray for Ryman’s perfect liver to come when the time is here but also for the family who will have to loose their angel.
So much love,