Bella’s Week

Reading…

Tea Time….we are working on pretend play

Therapy, therapy, and more therapy

Coloring

GJ Changes can wait till Signing Time is over – at least that is what Bella thought. The medical staff and her Mama disagreed and she let us know in no uncertain terms just how rude she thought we all were!

I can’t believe it but we are starting the paperwork/testing phase of getting ready for school. (She will be homebound, but it’s the same process) I have filled out forms. They just aren’t made for kids like Bella. Half of the questions I had to leave blank. When you spend the first 9 months of your life in an ICU setting, things are different. We have our first meeting next week. I am so afraid of how she will look on paper. I tell myself that it doesn’t matter, but it does still effect me. We are also going through this process with Joy, her older sister, and while expected, reading an objective report on her abilities and weaknesses is hard. The person is not there. It’s so cold. I’m afraid of Bella’s report. It’ll be fine, but my heart will be tender.

And if that wasn’t enough, we are having nursing problems. People have lives. But when their personal lives effect their work to the point that it effects their professional judgment, we have a problem. I had to let a nurse go – and that is very hard for me to do. I have a guilt ridden personality, so these things are hard for me.

We are now on our second nursing agency and this week the agency made me mad, and so now I am questioning in home nursing altogether. I am trying to be calm and let things blow over, but I don’t know. When you have in home nursing, you lose part of your freedom. Bella had a temp of 97 and a runny nose. The nurse called the agency and the agency called me to tell me to call the doctor. (They did that as a courtesy because they know I like to be involved and do the calling.) Excuse me? I call the doctor when I think it’s necessary. I know that nursing agencies have a limited scope of practice. They have limitations on what they can and cannot do. But seriously? 97 is not a temp and a little runny nose? I don’t think so. The Plan of Care is broad enough to cover that. I was furious. If she is sick, yes I will be the first to call the doctor. I don’t take well to being told what to do. Especially like that. There is an implication that I don’t know what I am doing and I need to get out of the way of the professionals. Sigh……Maybe I’m being overly sensitive. The little girls are being tested. Joy was labeled Mentally Retarded this week. There is a lot going on. But I have spent the weekend pondering if our family could survive without strangers in it 24/7. I don’t know. The freedom would be nice. But then I think about my friend Lacey. (she has no nursing) I’m trying to take a step back and realize that I am in an emotional place at the moment. We’ll see what happens.