Day 710

Ava is doing really great. She is completely back to norm. I will call Lung Center tomorrow and see if we can start weaning again. She is supposed to get one more does of prednisolone, but the Pharmacy couldn't fill it. Maybe Lung Center will say she doesn't need it.

She ate two bowlfuls of food and she did not spit up at all this past week. Barely any gagging as well. Maybe it's her body used to the Pediasure or us feeding her organic foods (or both)? We also gave her these baby cheese puffs (which aren't organic) and she would take little nibbles of them without gagging. It was amazing. It's the first time I saw her actually eat something that she put in her mouth, other than baby food. Praise God! He really does move mountains when you believe!

Ava also took steps around the one side of our kitchen island today (and it's long). She really wants to move and she is getting stronger every day. Tomorrow she is getting a monthly dose of IVIG. She actually is afraid now of the woman when she comes.

Ava weighs 11.70 kg. I thought I weighed her last week and she was 12 kg, but with her not spitting up this past week and eating more baby food, I can't imagine her losing. Although she is quite active.

Thanking God for Ava's growth and the plan for her life and praying for her to be vent and "G" free...

*Update: Shortly after posting this, the heating unit on the ventilator broke. Our night nurse was changing it out when the humidifier chamber filled with water spilled over and water went up the vent tubing and into her trach and lungs. The nurse suctioned her a couple of times before I heard her suctioning. I went upstairs and found Ava blue and told the nurse to stop suctioning her and bag her with O2. Ava started to look better after I bagged her with O2 but she still looked a dark color. I suctioned her again and got a bit more out. She was also wheezy after and we put her on 1 liter of O2. We called Lung Center and after talking to them, we gave her albuterol and saline and she seemed better. I found two suctioners that had blood in them, so the nurse obviously suctioned deep and irritated her trachea. She was on O2 all night and seems to be doing much better. Please pray for constant protection over Ava and our family.