Today our cross became heavier and our sorrow deepened.....
Our CF nurse called to let us know that Anna's throat culture had come back indicating that she has a CF germ known as Pseudomonas aeruginosa. She will begin an inhaled antibiotic routine that will last a month and then her throat will be cultured again in hopes that the pseudomonas is eliminated. If it is not- this germ will cause great problems in the future of her health.  We are experiencing feelings not unlike the day we found out that she had CF almost five years ago.... Anna's dad reminded me that the reason he started this blog was so that people would know when we are in need of prayer. We are in need of prayer. 

Nine Months Later....

Nine months since I have written.... can it really be that long? Where did the time go? I have thought about writing, I have thought, "This would be a good thing to share about Anna," I have thought that I did write, but I guess I didn't.

In the spring the CF doctor wanted her to go back on Pulmozyme, I side stepped it. But went through all the doubt and worry again anyway. I thought about writing about that.

In June Anna said to me, "Maybe I won't have cystic fibrosis when I am ten." I explained to her that it will always be there as part of her body. She thought about that for a moment then said, "Maybe when I am twelve." I thought about writing about that.

In July, she took an antibiotic for the first time in a year, for a night cough that wouldn't go away. It did. I thought about writing about that.

In August I was in a fret about Anna being exposed to another CF child in her brothers' swim class who has a rare bacteria that they don't know how to treat. The thought of Anna getting a bacteria like that almost made me sick.  I thought about writing about that.

Now, I am concerned about a family trip coming up in December- putting Anna on a plane full of germs, traveling with her medicines and equipment, praying she is in good health so that we don't have to use that traveler's insurance we haven't bought yet.

On the 15th of this month, the Feast of Our Lady of Sorrows, Anna and I went to her CF appointment.  I had left later than I intended for the hour plus drive to the hospital, and I felt overwhelmed to near tears. The morning had been typically stressful and now I was fighting heavy traffic to get to what is always an emotional experience for me- facing the reality of CF.   For some reason I remembered what the priest had said at mass earlier that morning. He said that even Mary, the most perfect and holy mother, was not spared sorrow.  What struck me though was when the priest pointed out that each of those sorrows was suffered because of her being the mother of Christ- being His mother brought those sorrows into her life.  As I hurried along with Anna on the busy highway, I thought, “This is my sorrow, to have a child with cystic fibrosis. As her mother I will watch her suffer just like Mary watched and entered into suffering and sorrow for love of her Son. If God did not spare Mary sorrow, if it was her great love that made her pain so keen, then I too must walk with Mary for the love of my child."  May He grant me supernatural grace along the way.

Anna again...

Anna in the last six months..... how do I sum that up? Well, she has been remarkably healthy throughout that time. It has only been in the past few weeks that we have had to deal with a cold and cough, but she seems to be recovering from that.

She had an appointment in December at the cystic fibrosis clinic. She loves to go to appointments. When I tell her we have one she says, "Oh! Yay!"  I don't know if she likes all the attention she gets or she enjoys getting the back of her throat swabbed- probably the attention. Although, this time when we left she made a comment like, "That was a long time," and she is right, the appointments are usually about two hours. Her height and weight are still great and I am so grateful. The nurse always asks if she has had any sickness and I told her no. I got the feeling that she didn't quite believe me.
The doctor asked me to consider putting her back on the Pulmozyme as a preventative medicine. I will have to think about that....

She is taking more responsibility for her medical needs. Lately she has been carrying her nebulizer cup down the stairs to her equipment. She has been hooking up her hoses and putting on her own mask. Then she pushes the buttons (in the correct order) on her vest machine. She watches her 20 minutes tick down on the digital screen and knows that she can take off her nebulizer mask when there is 8 minutes left. This  morning she read a book to me while on the vest and wearing the mask- her shaky voice barely coming through over the noise of the machines. But she didn't think anything strange about it. I was very proud of her. When we drive through the Walgreens to pick up her prescriptions, she asks if she can hold them until we get home and then she carries them into the house. She acts as if they are a special present for her- and I guess, in a way, they are.  The other day we were pulling out of the driveway to go to dinner at a friend's house and she called out, "Don't forget my enzymes!"  And at meals I usually ask her to tell me when she is ready for enzymes and how many she wants to take at a time (she takes seven at a meal). I have been putting out her basket of vitamins and medicines and having her pick out what she needs for each meal and place it by her own plate.  The CF team once told me that it was important for her to learn to take care of herself, so that it is second nature to her, like brushing your teeth- so that some day when she is on her own, she can take care of herself.  I can't take away her CF, but I can teach her about it, and how to take care of herself. That is what moms do. I can do that.

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.