After the appointment

It's good news!! The doctor detected no problems in her lungs- they were completely clear! How can this be possible when she has that horrible cough? I am so surprised and so grateful. Once the doctor determined that her lungs were clear it is like he dismissed the cold completely... so should I also dismiss my fears? I will say that I feel so much relief. He said she probably has a virus (why she did not respond to the antibiotic) and it will run its course. We are to keep up the extra therapy treatments to help her keep it loose. Also we got a nasal spray to help with the runny nose. 

Thank you for all who have been concerned and have added Anna to your prayers. We are so appreciative. I wonder if it hasn't been those very prayers that have brought us to the good results that we got today. Please continue to keep her in prayer as she faces the challenges of her CF.

Anna Update

We went through her first round of antibiotics. It did nothing. Her nose is running like a fountain and her cough has become so bad that it shakes her whole little body.  I had so hoped, believed, that this antibiotic would help her... and I am so disappointed. And now I am starting to get scared. I am trying to keep my emotions in check, one day at a time right? I know that because of her cystic fibrosis, that we will probably be facing many instances like this, and that I ought to buckle down, face it, and be brave- but my heart still grieves and my mother-worry is on overload.

We have an appointment this afternoon at the CF clinic. They will listen to her lungs, check her blood-oxygen levels, and do a throat culture. Then they will decide what the next step will be...

Prayers, please.

We have been blessed the past 3 months to have no issues. Last Sunday, Anna suddenly developed chest congestion with a wet and heavy cough. We have upped her therapy and today she started an antibiotic. She is not eating well either. Needless to say we are worried and asking that you please pray she get over this quickly.  .

March 21, 2012

She’s outside and I am going crazy. 

It has been a beautiful and early spring but having Anna outside and playing causes me so much worry.  It is in the dirt and mud and water, I am told, that the evil “pseudos” lurk, waiting for a chance to invade her lungs. How does one avoid these things that will make her sick for the rest of her life?

Every time she falls I want to wash her hands. I want to yank her fingers out of her mouth as she chews on them. I want to strap her in a stroller and never let her out.  I want to slather her in hands sanitizer…..

I want her to be happy. I want her to play. I want to see her curls bounce in the sunlight.  I want her to bounce the ball she loves so much.  I want her to live… for a long time.

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