Peace

We walked in today to find that Ava had a restful night and was fairly stable. We were concerned to learn that her urine output was not what they would have liked it to be. We, of course, were concerned that her kidneys were symptomatic and that she was beginning to suffer further from her mitochondrial disease.

We spent most of the day waiting to see if we were going to transfer Ava to CHOP. After talking to her geneticist we decided that she would best be served at this hospital. There is nothing different that they would do there for her than they would do here. We are glad to know that we don't have to transfer her now. She needs to rest and try to get better.

Due to some of Ava's labs and her tone it can now be presumed that she does have a mitochondrial depletion disease. We can also pretty safely assume that it is the same that Eric suffered from and that we are not going to know the route cause of it at this time. It seems we may just harbor a gene that has not yet been discovered. We did not expect this to go this way, but here we are.

Our doctors do not think that given Ava's current picture that she is suffering from a terminal illness at this time. We will try and continue to get her off the ventilator, get her bigger and stronger. We are going to try and give her a vitamin concoction to support her weakened mitochondria. Ava is very fragile now. She is still very sick. There is no cure for metabolic disease. What we can hope for is that Ava will not have a horrendous a course that Eric had. That she will somehow surprise us and be remarkably strong. We fee like if anyone can do that, it will be Ava.

We are having to make further decisions for testing for Ava. These are things we never really wanted to have to do. We know that God will lead us. We don't know what we are doing and are so concerned that we will cause her harm.

Ava is starting to take breaths over the vent, is trying to open her eyes and is moving some. This is all so nice to see. Her urine output is also increasing.

We got to see our other ladybugs today. It was the best medicine for these tired parents. They were able to visit with Ava too. They all handled it beautifully. Each one kissed Ava and she opened her eyes ever so slightly with each kiss. She loves her sisters and they sure do love her. I am so thankful that God gave each of our daughters that to hold onto. No matter what Ava's outcome is.

We do so hope to keep this little girl. We boldly ask that she is not very harmed by her condition. We pray she gets healthier, bigger and stronger. We are praying that her little body with her injured mitochondria stay strong and keep on producing energy.