Ava had her ENT appointment this morning. We had to wait an hour to be seen and Ava was such a good girl. It's unbelievable how patient she is. The ENT saw her and gave us a prescription for the 4.0 trach, a 3.5 trach and a cap for the trach to be used once she is completely off the vent at night. He didn't even have me schedule another appointment, but rather told the receptionist that I will call her to set up the overnight hospital stay for decannulation! Amazing!!! Our dreams are coming true! Thank you God! Now, just to get her off the vent at night, stay healthy and get approval from Lung Center.
Lately, she has even been telling us that she needs to go potty and actually goes! She also lets us know when she has a wet diaper.
Ava now weighs 12.15 kg. We are giving her 200 ml 3x a day and 100 mls at 10pm when she eats her 6 oz of food. We are back to giving her the Pediasure at 9am, 12pm and 6pm which is what GI wanted. The 9am feed really seems to get in the way of therapies and I am concerned that it might affect how much she eats during the day, but we'll see.
Thanking God for Ava and praying for a great summer...
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