Four Little Ladybugs

There are so many things swirling around in my mind. Nothing tied together, just thoughts rattling around.

Ava's lactate level is going up. This is not really good news. It's indicative of her malfunctions in her mitochondria. Now, Ava hasn't eaten since our admission here. Her mitochondria are hungry. So we are trying to feed her. This is with a ND tube. Hopefully she will get some nutrition and this will help to stabilize her fragile metabolic health. They started to feed her last night. Her lactate increased with 2 separate draws. They decided to stop feeding her. We came in this morning heard the news and got the kibosh put on that. Girlfriend needs some food. They called the neurologist and he agreed. So Ava is fed.

We hope that her underlying metabolic disease is not too insult that she can't recover from it. Again, only God can do this. We just support her and try to get her whatever shot is available.

She is moving around a lot more today. It's fun to see.

Because we are at a point in DNA research that for the most part reveals that Ava does not have any mutations on any of the KNOWN genes that cause mito depletion and COX deficiency AND Ava is now symptomatic we can assume she has what Eric had. Therefore we are needing to have the testing done on Ava that we so wanted to avoid. On Monday or Tuesday Ava will have a lumbar puncture, a muscle biopsy and a skin biopsy. These things will tell us more information about her disease. They will also take months to come back.

We are forced to live in the moment. We don't know how to balance that with the ladybugs at home. We need to figure out how to incorporate school, work, three healthy kids at home and one very sick on in the hospital. We can't be everywhere all at once, but we wish we could. We are spread so thin. We need to work so we can continue to provide for our family. But the added stress that comes with that is overwhelming, at best.

I feel like we need to be here to make sure that Ava is getting the slow and patient care that she requires. That we are gentle. Not quick as medicine tends to be. I did suggest to Ava's resident that she should get out her pen and take notes because we have an interesting case study here. Also that AI needs to establish a mitochondria protocol. It is my feeling that as the research base increases and more genes are identified there will be more reported cases of this type of disease.

We are so happy that the physicians and staff here are really listening to us and following what we, as a treatment team, feel is in Ava's best interest.

If I look down the road I become overwhelmed. As one that likes to have an action plan that is frustrating. I miss my bigger bugs. I want to hold my littlest bug. I can not fix it, I so wish I can. I wish I could bear these tests and this illness for her. But that is not God's plan for Ava.

It's overwhelming to know that we have a disease in our family that is on the cutting edge of genetic research. We are paving a way to what we don't know.

God brought Allan and I together. I know that this is His plan for our family. I also know that Ava's sisters were made by God and are given the "stuff" to handle Ava's life and her illness. I have to hang onto that when I worry about how this will affect them.