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.

Cold

Somehow, and I always rack my brain trying to figure out how, our home is host to a summer cold. Those who got it first are slowly improving but the head cold, for some, has dropped to a chest cold. This is what we must avoid for Anna, if at all possible.  Her runny nose began the other night in her sleep as I heard her toss and turn, breathe heavily through her mouth, and snort a time or two. I lay there listening to her, and worried. When she woke up she told me that her throat hurt... well, actually she said, "There is something in my throat." Maybe it was goop.  In any case, we put her on a decongestant right away but it doesn't seem to be working too well.  I just wrote the CF nurse to ask if she had a suggestion for a different type of decongestant and I got back an automatic-reply email that she was out of town until next week. Frustrating. Please keep Anna in your prayers as we battle this cold and try to keep her healthy. 

On a different note, Anna has recently taken charge of her own therapy treatments.  She described her respiratory therapy to me one day like this: "First you put on the medicine. The smoke comes out. You cough and feel better. That's the therapy."  She also insists on snapping the buckles on the vest by herself and will often want to attach the hoses to the sides as well. It is our goal as parents to teach her to take care of her CF needs as early and as independently as possible- so that someday she will have no troubles, or even a second thought, about following the daily care guidelines for CF. If we can teach CF care as a normal routine for her, then her chances for a longer and healthier life will increase....

My goal, my prayer, is that Anna outlive me- and then some.

Looking Good!

Anna had her quarterly check up at the CF clinic yesterday. She was a model patient, doing all the
nurse, pulminologist, social worker, psychologist, nutritionist, and respiratory therapist asked her to do. I simply explained what they were going to do and she aided them with perfect cooperation- not bad for a two year old!

The overall response by all the members of the CF team is that "she looks good." I was particularly heartened by the doctor's statement after he listened to her lungs, "Perfect."  She has been healthy now for over six months and I am so grateful. I will continue to pray, bless with holy water, anoint with holy oil, petition St. Jude and beg God's continued mercy for her health and happiness.

And she is a happy child. She brings such joy to our home. There is no lack for smiles when she is around....

Victory!

Two years ago when Anna was hospitalized as an infant with pneumonia, she was put on a daily inhaled medicine that thins the mucus in the lungs so that it can be more easily coughed up. Scared from our experience and wanting only what was best for her, we administered this expensive medicine. After a while I started to wonder if she needed it. Once she was out of the hospital a few months, I never heard her cough at all after her therapy. She didn't seem to have the chronic cough of CF- at least not yet. Why were we giving her a mucus thinner to help her cough if she wasn't coughing?

After researching this medicine a bit I found out that it had never gone through a long-term study. The longest it had been studied in patients that were using it was a year. And- it had never been studied on persons under the age of five. I asked the doctor if we could take her off this medicine. The answer was no- because we were in the middle of cough and cold season and therefore it was not a good time to take her off this medicine, which he felt was a mild medicine and harmless anyway.

I asked again another time if we couldn't take her off this medicine- no was the answer again.

Finally, last week she had another appointment and I was determined that I would again broach the subject of the not-needed medicine. As her appointment approached, I began to have more than my usual anxiety as I played out in my head the conversation I would have about this medicine with her doctor. How would I defend my position? I talked to Steve about it and he pointed out that the doctors and staff are hired by us for their expertise, but we are not bound in any way to follow all of their recommendations. He said that we could just take her off the medicine ourselves, at least for a trial time period, and see how she faired.  I had never thought about doing that. Once I accepted that as a possibility, I felt more in control, but I still wanted the doctor's approval.

So to give a short ending to a long story, I took a deep breath and told the doctor I wanted to take her off the medicine. He looked at me, asked if she were having any respitory issues, and then agreed to take her off the medicine until it may be needed in the future. My thoughts exactly. Just like that.

Victory! A small one, but a victory none the less.