The next couple of weeks are busy. Ava has Cardiology this Tuesday, her Bronch next Monday, Immunology on Tuesday. She is back to spitting up but she is on 250mls, 3 times a day, so I don't know if it's because of the increase or just her again. We have been feeding her while she is asleep the last couple of days because she is spitting up at every meal.
Ava also got her orthotics and new sneakers on Thursday. It was the first time she has been in a store. We also went to Bath and Bodyworks. She had so much fun and kept signing "more". She seems to be doing better with her feet since we got the orthotics.
She still hasn't started talking with the valve, but she loves to talk with the vent when she is going to sleep. We really need a therapist that can help us with this. Our speech therapist didn't know what the passy-muir valve is, so I am hoping that she will learn more about it.
Tomorrow I will call Lung Center and I hope that we can start weaning her off the vent during nap time. We shall see. We didn't have a nurse last night or today and we won't have one next Friday and Saturday night and Sunday day. If anyone knows a great Medicaid nurse, we have that ability now to take private-duty nurses, please let us know.
Thanking God for his endless opportunities and praying for energy, and Ava to be off the vent all day...
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