Sorting things out

Ava had another good day today by our assessment. She seemed to do better with her CPAP trials. She also has a lower setting when they out her back on the vent as well. Her tone is a little better: moving arms and legs. She moved her arm up near her mouth and now we are worried about her inadvertently pulling on her tubes. A little spunk never hurts I suppose.

I am still worried about her eyes and her ability to see well. I don't understand it. I wonder if it has to do with a medicine that she is on. I hope we can take her off of it soon. Her neurologist seems to go back and forth about it.

The new Attending is willing to entertain my hypotheses about Ava. She is trying to think about reasons why Ava would have bad lungs. She wants to see if someone can help her prove my late-onset GBS theory as well. Neither of us doesn't think that we can do that since she's been treated with antibiotics already. All the while we have to wonder about mitochondrial disease.

Ava's neurologist called on his way out of town. He is not really optimistic and wants to see what happens over the next couple days while he's out of town. When he returns he said we will talk about what we have to do. This is frustrating. We don't know what we have to do and we certainly don't want to be pressured into making any choices. We need clear direction before we do anything.

What is clear direction? I guess it could come in a number of ways. Eric's DNA could show a mutation on a gene and then we know Ava doesn't have what he had. Ava could get significantly better, her lactate could drop again. Ava could get significantly worse. Ava's CSF (cerebral spinal fluid) results from her LP (lumbar puncture) last week could come back. Ava's muscle biopsy results could come back. Or we could miraculously find out why our baby has bad lungs. (Like maybe it could be a prematurity thing). We continue to pray that it's the answer we all hope for . We ask God to reveal to us what it is that He wants us to pursue for Ava.

Tomorrow is Thanksgiving Day. We plan on staying home for the majority of the day to be with our still under the weather girls, my parents and my brother and his family. As much as we have weighing down our hearts we have lots to be thankful for. Because of all of you who read our blog, pray for us, donate to Ava's fund, support us in the myriad of ways that we can't even enumerate we can walk this walk. God has called all of you to support our family so we can do what we need to do for our children.

When Eric was sick and dying I felt the hands of God in my soul molding me, shaping me, helping me breathe. I don't feel that through Ava's illness. I've been frustrated. I KNOW that He is there. But I haven't been able to understand the difference. I couldn't feel Him. I can see the work He is doing through Ava, in the community, and for us. But I couldn't feel Him. Today I realized that I was looking in the wrong place. God is not supporting my internally, that was His gift to me during Eric's life. It's special because it is part of Eric's story. Ava is different. her story is different. My relationship with God is different. Today I realized that He is here and I feel Him. God is holding my together from the outside. I am not crumbling. I am standing. It is because of Him and His love for us.

Through my fits of anger, my temper tantrums of not wanting to do "this" again, my questions of where God is and why is this His plan for TWO of our kids He is there. He has never left our sides. He is using all of you to encourage us to carry on.

We have oh so much to be thankful for.