My Poor Beautiful Anna

Today was a rough day for Anna. My heart went out to her so many times.

She started the day by having a coughing fit at 5:20am that lasted for 20 min. That was the most she has coughed since she started last week- I guess we will end up getting that antibiotic after all. Sigh. I then had to wake her up to get her therapy done before school. I hate waking up a sleeping child but the therapy disrupts the whole school routine. Luckily, she took it in stride.

About an hour after breakfast she started to have pain in her tummy and felt very uncomfortable. She was constipated.  Part of CF is difficulty regulating the excretory system. Anna has had a lot of issues with this and goes from hard, painful stools to overly loose stools sometimes within a single day. A lot has to do with the dosage of her enzymes but also liquid intake and a couple of other factors. Yesterday she didn't go at all and I knew that meant that we were going to have a hard time today. I say "we" because I feel so badly for her that sometimes I cry right along side of her as I hold her little body and she tries to push.  It is so awful. All morning she wanted to be held or she would be playing and then suddenly she would be crying.  As her discomfort increased so did my concern. I finally gave her a suppository and within a minute she was successful.  She cried. I cried.... not just because of her pain, but because I can't help think at these times that it is my fault that she has to deal with such hardship. My fault because I can't regulate her food/medicine etc. and my fault because I gave her CF.  I guess I haven't gotten over the guilt yet.

An hour later we were getting ready to leave the house and she got her finger caught in a door when the wind blew it shut.  You know when they open their mouth to scream and no sound comes out? That kind of pain. I felt so bad, after all she had already been through. It was bleeding around the nail and began to swell immediately. The rest of the day she held her hand up and treated it gingerly.

She got down late for her nap because we were out of the house at the regular time for nap. I had to wake her up a second time in one day so that she wouldn't sleep too late plus I needed to get in her afternoon therapy.  Did I mention that I hate to wake a sleeping child?

Then came dinner. On the advice of the nutritionist, I was told not to give her milk with her meals so that she would fill her belly with real food. Well, dinner was the first meal I was trying this new routine.  It didn't go over so good with Anna. The poor child asked for milk so many times. I offered her water. She begged for her enzymes because I usually follow the enzymes with milk to wash them down. I wouldn't give her the enzymes when she asked.  She cried, she begged, I stayed strong.  It was really hard... but she ate one of the best meals I have seen her eat in a long time!

My poor, beautiful Anna went to bed tonight with the same sweet kisses she always gives, waving to each of the kids as she was carried off to her bed. She weathered a difficult day and showed me what it means to endure.