Anna's summer is going well. Even though she has been exposed to many people in many places, she seems to be warding off any serious germs.  Happy to report her overall good health.

The other day I asked her if she knew what cystic fibrosis was. She said, "No." I began to tell her about lungs and how they help you breathe in and out. Then we both took some deep breaths and tried out our lungs. I told her that people with cystic fibrosis sometimes will have problems making the air come in and out because there is stuff stuck inside the lungs.

She said, "That is why I take my medicine."

I replied, "Yes, it is very important to do therapy everyday."

I went on to explain that people with cystic fibrosis can get belly aches.

She said, "That is why I take my enzymes."

I replied, "Yes, so that they can help your belly use the food to make you grow big."

"And I am BIG, " she stated proudly.

Maybe she understands cystic fibrosis after all...

Thank you for your continued prayers. Please pray, too, for those who are developing medicines and therapies that will help Anna to live a longer, healthier life.

When you have a child with cystic fibrosis....

When you have a child with cystic fibrosis they might say something like...

Anna: My belly is hurting.
Mom: Do you need to go to the bathroom?
Anna: No, I just need a hug.


Anna: I just blessed myself with my germs.
Mom: What?
Anna: I had my finger in my mouth before I touched my head.

Mom: Anna, if I could I would take all your coughs for myself so you could feel better.
Anna: But, Mom, I don't want you to be sick.

Anna: I made Jesus happy. I ate all my food!

Mom: Move over, Anna, I am going to crawl into bed with you.
Anna: But, Mommy, it has my germs.

Anna: I'm sorry, Mom, when I hugged you I put germs on your shoulder.
Mom: It's ok, Anna, I am not afraid of your germs and I never will be.

The other day at dinner my eight year old son, who reads constantly and retains nearly every bit of it (lucky dog), says out of the blue, "Did you know that the average kid gets eight colds a year?" No, I didn't know that...

Anna is getting over a cold. You wouldn't know that because I didn't tell you. But here's the thing, every time she gets a cold I have to decide whether or not to call the CF doctor and get her on an antibiotic.  Of course, I can call the nurse (if she happens to be in that day) and tell her about Anna's condition, but more than likely she is going to tell me to start the antibiotic. They told me once that if she coughs in her sleep or more than say, four or five times in an hour, then we need to get her an antibiotic. They admit that much of the time the cause for the cold is a virus (not affected by antibiotics), but the antibiotic is a safety net so that if the cold turned bacterial she would be covered. I have also been made aware that she is on a cycle of three antibiotics- changing the medicine each time she has a health need (ie cold) so that her body doesn't become accustomed (or is the bacteria that doesn't become accustomed?) to the antibiotic so that eventually the antibiotic won't be effective. So what I am hearing is, the more times she has an antibiotic the less likely it will work in the future.

So, here I am imagining my precious daughter at age twenty, in the hospital with a severe respiratory condition and the antibiotics they are giving her aren't working because when she was a little child I called the doctor every time she coughed and put her on medicine "just in case."  And I worry all day long as the cold progresses, "Is this the time I should call for the antibiotic? How many times did she cough in the last hour? Is it getting worse or better? Was that a cough or a snore? What if I don't call and she gets really sick? How will I live with that?" And round and round I go for days.... but happily this time, she is getting over it on her own.

But, what about the seven other times she is going to get sick this year?

This morning Anna went to the lab for her annual blood draw. I started praying the moment I got up. I feel so badly that we have to put her through this. She has to fast, so as soon as she woke, the first thing I had to do was explain to her that she couldn't have her morning apple juice. I was not looking forward to that because she is a creature of habit and that apple juice is so important that she often insists on it before she will even go to the bathroom.

 Here is how it went:

Mom: Anna, you are going to the doctor today with Daddy. You can't have your apple juice until you get home but you can have some water.  (Brace self for melt-down.)
Anna: Ok.
Mom: Where are you going?
Anna: To get some water.

Later as I am getting her dressed:
Anna: I like to go to the doctor. If I eat a lot and take my enzymes, I will grow big.

Steve, who takes her because I do not want to watch them poke my baby, reported that she didn't even cry. When she came home she was most excited to show me her new "sticker" which was actually a Snoopy band-aid.

She has had three major colds since November. One of those she took antibiotics for, the other two we waited to see how she would handle, and she was able to conquer them on her own. Presently, she is in a good state of health. She is growing well, eating well most of the time, and generally a delightful child with an occasional 3 1/2 year old moment. She is active and compliant with her health routine so far, though I noticed hesitation to do her therapy in front of some of her sister's friends who had spent the night. She is quite offended if you use the word "little" in any way state or form in reference to her, because she is "BIG."
And don't you forget it.

And that is our Anna.