Next Tuesday, Little Dorrit has her eye surgery scheduled to remove the hemorrhage in her right eye. Hooray! After the surgery, she should be able to see out of her right eye again although she will have a case of amblyopia (lazy eye). We hope with the right types of therapy, she will be able to strengthen the muscles in her eye eventually. Little Dorrit's nurses are also working on getting her down to bolus feedings which is only giving her food a few times a day, like a normal baby would eat. She has been on continuous feeds for a long time where she gets her food over a two hour period with a one hour break. Getting her used to bolus feedings before she comes home would be a great help to us. But, again, everything is up to her because she is the big boss.
This week, Little Dorrit is also being evaluated as a candidate for a liver transplant. After her condition was diagnosed, we'd discussed the possibility of a liver transplant for her eventual treatment, as the liver is where protein C is produced. When her hematologists brought it up to me again a few weeks ago, I guess I just didn't realize that they would want to have her evaluated while she is still so young. This Friday, a group of doctors will discuss Little Dorrit's candidacy for a new liver, and Mr. Rochester and I will be meeting with a liver transplant nurse on Friday to learn more about all of this. Sometimes, I just have a take to take a deep breath and focus on one thing at a time so I don't feel completely overwhelmed by all of the decisions we have to make concerning her care. A liver transplant sounds great because if it is successful, it could completely fix Little Dorrit's protein C issue. And yet, a liver transplant can have many risks involved with it and it's another condition where she would have to be on medicine most likely for the rest of her life. So, that's us for now. I can't wait to see our little girl this weekend and I hope we can bring her home soon!