Update

I just wanted to pass on that Anna is eating better these last few days. I was so happy the first night that she decided to eat that I almost jumped up and down.  I thought maybe it was just a fluke but she ate better the next meal and the next. I had put into practice some of the suggestions that the nurse and nutritionist had made, plus Anna had also at the same time worked through her constipation. Anyway, I am very grateful to have her eating better (though she still throws a good deal of food!)

Anna

2-16-12

I am beside myself.  Anna has decided that she no longer likes food. It started about two or three weeks ago and has gradually gotten worse. Now at a meal she regularly hits the food off the spoon as it is offered to her. She won’t try anything that is put on the tray. Foods she once liked she won’t open her mouth for. And forget trying anything new.  When I have tried that she will scream in her chair- often through the entire mealtime.

Now, I know this sounds like a typical toddler- and I suppose that it is a common behavior for this age, but I have had four other children and I am sure that none of them took it as far as Anna has. So, she will grow out of it, right? Perhaps. But in the meantime her weight will probably drop and then what will we do? See, people with CF have difficulty absorbing fats and protein and that is why we have to give her pancreatic enzymes with every food containing fat.  And we are encouraged to give her a lot of extra fat and calories- heavy cream, butter, oils etc.  If she is not eating, where is she going to get the calories that she needs to maintain her weight? How many enzymes do you give if she takes three bites an entire meal? If you give her too much enzymes then she will have problems moving her bowels.  And that causes her to be uncomfortable and even have pain.  

I called the nurse today and also talked to the nutritionist on her CF team.  They each had suggestions. I still feel confused… and very worried.

Feb. 3, 2012

The Anniversary

I knew this date was coming up.  I’ve thought about it quite a bit. And yet, as this anniversary of Anna’s hospitalization has arrived, I still feel, I don’t know, like something is lurking under the surface of my day.

It was a whole year ago, but it was one horrible week in the life.  I am very grateful that as this date

has come again, Anna is well and other than being finicky about eating (which is a worry since she
has to keep her weight up), she is a bouncing blond-curly-haired toddler ready to make typical trouble (she had her first lay-on-the-ground tantrum just yesterday).

One scene from our hospital stay has haunted me this entire year. There was a nurse, one of many, who was holding Anna.  She pointed to the top and back of Anna’s little head and said with finality, “Here. Here is where you can kiss this child.” I remember looking at her in confusion and then it sank in. She was telling me that it was not safe to kiss my child…..

Throughout this year I have struggled with that memory- as I snuck a kiss on her forehead, her little cheek, her neck. I have struggled when I was feeding her and she would stretch out her arms to my face and want to touch my nose or put her fingers in my mouth. I have thought, “Am I jeopardizing her health with my affection?”  It has been a process of letting go, but I have come to realize that I cannot NOT show my love and affection to this amazingly precious, beautiful, dynamic, sweet,

and totally loveable child. I will probably never kiss her on the lips, and I will keep my distance if I am not feeling well, but I will and I have planted a kiss on nearly every part of her body! She is mine and I am hers.

Wende