Juggling

We are juggling so much right now. It's a shame that Allan is actually the only one of us who can actually do it.

Ava is an "add-on" for her muscle and skin biopsy tomorrow. She will stop her feeding at 4am, this way she won't be without food for a long period of time. It is hard to know what to do. What is more important, feeding or samples. We continue to pray for guidance. We want Ava to have every chance to get stronger so she may be able to learn to breathe on her own again. Nutrition is a big part of that. We don't want to wait for her to get on a schedule because we don't want her to get too reliant on the vent. Plus I don't really want to understand all of this. There are too many mind blowing implications.

So we juggle her feeds, her biopsy and eventually her settings. We hope they are the right choices as we are shooting blind here. Of course God is directing the trajectory. The current working plan is that we will hope she gets an early time and have the procedure. We also hope that her lung is inflated. If it takes too long, then we will restart feeds and probably scrap the biopsy. So we will wait and see. The biopsy is important to see what is going on in Ava's body. It won't help to "cure" her. We will just know. The geneticists want it for research and to get an answer. This is not our top priority. The annoying thing is that it will take about a month before we know what is going on in Ava's body. I hope we have her that long.

I am worried about her ability to come off the vent. I hope she is strong enough. I wish she could get food, uninterrupted for 48 hours. Baby steps I know.

I want to find Ava's baseline. I want to raise her to her full potential as an adult. I want to teach her about Jesus and His love for us. I want to raise a hearing impaired child. I want to hold her and never let go. I so very dearly want all of this to be false. And I really want to be with all my girls. I want Alexa to keep her "A" buddy. I want Elaina to smother her baby with love. I want Emmy to hold Ava and sign to her. I want her to sit, stand, walk, talk, run and feel the wind. I want to say to her, "Ava, I remember when we almost lost you". I want to be annoyed by her, laugh with her and be able to put her in time out. I want to raise the four children I have. These are the desires of my heart. I know that God is ABLE. He does all things according to HIS purpose.

A song that is in my head: I am pressed, but not crushed. Persecuted, not abandoned. Struck down, but not destroyed. I am blessed beyond the curse. His promise will endure. His Joy will be my Strength. Tho the Sorrow Lasts through the night, His joy comes in the morning. I'm trading my sorrows. I'm trading my pain. I'm trading them ALL for the joy of the Lord. I'm trading my weakness. I'm trading my shame. I'm trading them all, for the Joy of the Lord.

Trade them with us. It just makes life livable.