Waiting....

We are waiting. Anna finished her 28 day inhaled therapy last week. Then she went to the hospital for a throat culture to determine if the germs are still in there. We are waiting until Tuesday for the results. In the meantime she has gotten a bad cold that has her coughing pretty hard and now we have to determine whether or not to put her on an oral antibiotic for that.  Sigh.

Just thought I would let you know where we are at in the process since so many of you have asked and shown concern for her. Thank you for you prayers and support.

Anna is Five

Anna is one week into the 28 day inhaled antibiotic. She is handling the two, hour-long therapy sessions well. In the morning, I teach her literature lesson during therapy and she follows up with playing a computer game on Nick Jr.  For the evening session, she is content to watch a video or play more games. She is also fond of the Starburst candy she receives after the treatment, suggested by the nurse, because the taste of the medicine is unpleasant. Honestly, I don't think the taste bothers her at all, but she wouldn't admit that if it meant there was no candy involved.  She really has no symptoms of sickness and continues on in her usual way throughout the day. I wish I could take the situation in stride as she seems to do.

Today she turned five years old. If you have never met her, you should know that she is very clever, has a quick sense of humor, is easily a year ahead in school, sounds like a teenager at times, and loves to be around people. She can stand up to her older brothers, focus on what needs to be done, and frequently offers to help. She sings much of what she is thinking, has a mind of her own, and is often found in a corner reading library books. She is amazing. She is my sunshine. I love her so much.

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.