Optimism
Afton continues to do well. Her liver function is completely normal. She has had a cold as well as a fever on and off. So, she is being treated with a variety of antibiotics to help clear up any illness or infections that she may have. This will probably be a constant battle because her immune system is very compromised. Believe it or not the hardest part about taking care of Afton right now is a horrible diaper rash. Hopefully that clears up soon because it is bringing her a lot of discomfort.
Even though there is a lot going on, we wanted to focus on some of the positive things going on. As both of us started to return to work and touch base with family and friends, we realized that we have not done a good job sharing the good things. A friend of ours stopped by the hospital and she was shocked at how normal and healthy Afton looked. She was expecting to see something much worse. Right now Afton is a normal kid, just spending most of her time in her crib. She watches movies, reads books, plays with toys, and visits with her many doctors and nurses.
Afton’s metabolic disease (citrullenemia) is cured. She is no longer at risk of high levels of ammonia that are damaging to her brain. Her formula now contains full protein and she has no diet restrictions (except grapefruit, papaya, and pineapple - these foods are too acidic and can make her medications ineffective). We both feel that Afton has a sparkle in her eyes that was never there before. She is so much more content. Her attention span is longer and she is much less fussy.
Everything is going well and again her new liver is working perfectly. However, this is still a bit of a medical mystery. The doctors cannot explain why this liver has not started to fail. We are trying to be optimistic and so are her caretakers.
