If you look back to a year ago today, you will find that Ava came off the ventilator for 15 minutes. It was the start of her quick journey to being vent free. I remember Ava's doctor saying that a year from then Ava could be off the vent. I remarked that a year from now she could be trach-free. They laughed and I hoped (and prayed). Fast forward to now and God has granted our prayers. In addition to be vent & trach-free, we were told that Ava does not qualify for a special needs teacher anymore. Ava is "normal" or an average child. She is so much more than that but after being told that Ava would be severely mentally handi-capped and also being in the hospital for so long, Ava has surpassed everyone's dreams of her. I look forward to seeing God's plan unfold for her.
Today is also the last day that Ava has to take Viagra aka Revatio for her heart. One more medication is gone - Woo hoo! I am also going to ask her GI in the coming weeks to see if we can get rid of her Prevacid for acid reflux. How amazing that would be! She would only take her inhalers and vitamins!
Ava also has been up and down in her weight - 13.5 kg, to 13.1 kg to 13.15 kg. It's hard to guess how much Ava is eating but she is still on 600 ml of Pediasure. Our goal is for her to be fully fed orally by this summer and no long need the g-tube. She has some issues with chewing, her mouth gets tired, so she just needs to strengthen. Same thing with her legs. She needs to strength them as well. The physical therapist who came in to test her said her ankles were still weak and need to get stronger. We will be working on exercises for her since we fired the PT last week due to her scheduling issues and gossiping with the nurses. Ava's sisters really enjoy helping her "work out" and come up with activities to motivate Ava to work. Ava does go up and down stairs but we need to continue to work on those often.
Praising God for Ava's growth in a year and praying for Ava to eat and strengthen...
