A Good Day: We'll Take it When it Comes

Emily, Alexa, Elaina, and Ava are all tucked in for the night. The older three are on "vacation" at Grandma and Grandpa's house. ( It's a vacation for us and for them. Not so sure about for Grandma and Grandpa however....) Ava is snuggled in for the night at the hospital.

This marks the end of a good day. Who would have thought that a failure to thrive preemie with pneumonia would ever be an answer to prayer? But it is and she is. Ava is tolerating her new feeding regimen well. She is also slowly but surely beginning to perk up some. She had lots of awake time today. She played with her monkey and a new Beanie Bear that one of the hospital pediatricians gave her. Tracked them, batted at them. Held them in her hand. Allan put her hand around the ring of the monkey and she held it for over an hour. She'd stare at him, move around a bit, pull on it. It was really cute.

The Cardiologist read her Echo Cardiogram. Everything looks great. She had a small VSD and a questionable Ductus a month ago. On this exam, both are not detectable. He is not concerned with Ava's heart at this time. YEAH another specialist we get to put o the back burner! I even get to cancel her upcoming appointment with him!

I spoke with our Neurologist by phone today. He called the floor to check on our sweet baby. He was pleased that she has pneumonia and that her lactic acid level was what it was. He was also really happy to hear about how she was playing with her toys.

We will be testing Eric's DNA for mutations on 2 genes now: POLG1 and DGOUK. POLG1 is actually in process and should be ready in 2 weeks. This is the same time that the Mito-Meta array will be ready for Ava's DNA. We actually thought that POLG1 wasn't started yet due to the trouble in the lab. So this is good news. Once paid for we will start DGOUK- Hopefully by the end of the week.

We know that Ava may have underlying disease, but it nice to think about how to treat an infection and turn her around nutritionally. It seems too simple and I have my doubts, but I see it starting to work. So I'm going with it.

Please pray for strength for Ava. She really needs to grow and move more. Develop muscle tone and head control. She is tough and a fighter. We see that.

Please pray that the girls are protected and not too scared by all that is going on.

Please pray that Allan and I are sustained and can discern what God is telling us.

Please pray for Ava's doctor's and nurses that they can be wise in her treatment.

(I would still love some supernatural timing on results. I am a little tired of waiting and have never really been that patient. I also pray that Eric does have a mutation on one of these two selected genes. Then our search is over. Plus from a cost standpoint, we would really love to get it right with one or two tries. If we can't find a mutation on Eric's genes or Ava's then we have to face the fact that they have not discovered the gene that is mutated yet. We don't want that. It is what it is, however.)

My heart and soul long to be done with all this mess and know. We so want to know that Ava is OK. We know that God knows and it's all in His timing.