Ava had a really good week last week. She works so hard with her therapies. They say that she is on "Fast Forward" and really working through the things she needs to do. She is trying to stand a little more. I gotta tell ya though - it is really hard dealing with people in and out of our house every day along with the opinions. We really have no privacy and two of the therapies made a comment to one of our nurses about why I wasn't there all the time and how come I can leave when they are there. I don't think they understand what nurses are for - they are there to be an extension of myself so that I can leave the house and take care of things and the other two kids. Another therapy actually asked if she should only come when the nurses are there, as if I can't take care of Ava... Do they think this way because I'm blond? What makes these people think that I am incapable of taking care of my child and that I know her better than any nurse or doctor possibly could? Don't they understand that the hours are based on how busy you are, not just how the patient is. Do they think that the parents are untrained?
In other news, Ava gets her GJ replaced at Strong Memorial on Thursday. We were supposed to have ENT but that is moved to September 1st. She will be put under for this replacement. Hopefully the next replacement will be a new mickey for her tummy.
We no longer have nursing on Friday and Saturdays until PSA (our nursing agency) finds another nurse. The one that was supposed to train on Wednesday and Thursday decided that she no longer wanted to be a home care nurse. Anthony and I split up the night shifts so we can be with the kids during the day.
Thanking God for Ava's strength and attitude to fight and praying for her lungs to grow...
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