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.

Health and Happiness

Last week Anna woke up from her nap in respiratory distress, a barking cough, that apparently hurt because she sat up crying. Through her sobs I deciphered, "But I wanted to be happy !" It seemed to me that she was equating feeling good, being healthy, with happiness...   is so, she will find herself "not happy" a lot on her road of life. How does a parent teach a child to be happy despite their lack of health? It sounds like a case for God's grace, for only saints seem to have thrived in this state, finding their joy in God and offering their suffering to Him.

Anna....

There have been many times I have wanted to come to the computer to update you on Anna. But I wonder, "Is that something someone would want to read?" They are small things in life, our little lives, and perhaps they are important to only me....

Anna maintained her weight when it was checked at her last appointment.

Anna turned three years old at the beginning of October.

Anna feels that being able to potty on the toilet herself definitely makes her a "big girl."

Anna jumped up on a two-wheeled bike (with training wheels) and peddled around the street herself.

Anna loves to be outside.

Anna has a habit of putting her index finger on her upper lip- which drives me crazy because of
concern for spread of germs.

Anna stopped eating for a few days when she got a fever- and when the fever went away, she continued to push away her food.

Because we love Anna, we declined a birthday invitation to an outdoor/indoor play land. A very
difficult decision.

Anna comes up to me numerous times a day and hugs me and says, "I love you."

Anna told the pediatrician that she was going to be "The Queen" for Halloween. Not "a princess", not "a queen"- The Queen.

Anna blows herself kisses in the mirror each night before she crawls into bed.

Anna is sick right now. The fever was followed by a heavy wet cough. We are doing three breathing treatments a day and have her on an antibiotic. She has not been sick for a long time.  I forgot how hard it is. But she reminds me when it is time for her extra treatments- taking it all in stride...

Update

Anna had her appointment today. My main concern going in was that she had gained sufficient weight. Her appetite is not consistent and since she did not register weight gain at her appointment in June, I wondered what would be the response if she did not gain weight this time. As it turned out, she gained 1 1/2 pounds which was enough to bring her up to the 90% in weight and she is also in the 90% for height. She is actually bigger than any of my other kids at that age! Alleluia!

Steve had a sobering thought the other day- what would life be like without the enzymes that allow her to digest and absorb her food? How blessed we are to live at a time when this medicine is available. Anna's doctor once told us that 20-30 years ago, the diagnosis of CF was an early death sentence. There was little they could do and most children died before the age of ten. A friend of ours told us that he once knew two children of the same family with CF and said that they were "difficult to look at" because they were so thin. They both passed away before the age of twenty. When a child can not keep on weight and grow properly, they have less of a chance of fighting infections when they come their way...

Another thought that Steve shared was thankfulness that we were aware of Anna's condition within a few weeks of her birth. Many children are not diagnosed until the age Anna is now (nearly three) or even older, some much older (the doctor told me he recently had a newly diagnosed patient that was in his early twenties). We have been able to give her enzymes and therapy and in doing so, prevent problems she may have had in these early years of growth and development.  I remember the staff at the CF clinic telling us we were "lucky" for the early diagnosis- and I wanted to scream at them for the pain that I was in because of the diagnosis of my baby child... but, like Steve, with a couple of years behind us, I see the value in knowing her condition early on- as painful as knowing has been.

By the way, Anna overcame that summer cold. Thank you to all who keep her health in their thoughts and prayers. We are extremely grateful.