"Mom, my belly won't stop hurting. It's like someone is stabbing me."

This is what Anna wrote on the white board this morning when I was out of the room. It is not the first time she has described the feeling in her stomach as "stabbing".  It's not even the first time she has written that on the white board.

She has had several CF clinic appointments since I last wrote. And though her lungs seem to be doing well, her weight continues to be an issue.  Though she doesn't complain of stomach aches everyday, one could understand having a hard time eating up to par if "stabbing" pain may follow.  The pain seems to be random as we can never discern the cause (a certain item eaten, not enough enzymes taken?). This is frustrating. No one likes to have a symptom without a cause, because then how can you predict it or change it? When this sharp pain comes, she usually lays down on the floor with a pillow under her belly. She often will take her school book right down on the floor in front of her and keep plowing through her work the best that she can.

This last time at the clinic when her weight did not improve in the way that they wanted, (1/2 lb. a month is minimum) they said she had to come back in in six weeks (instead of three months) and she may have to go on a medication to increase her appetite. (I hate the idea of adding another medication.)  If that doesn't work.... maybe a feeding tube?  No one has said that out loud yet, but I remember reading that somewhere along the line.

I could go into all the ways I try to get her to eat- the bribing, the threatening, the praying- or I could estimate how many times I have heard, "I'm not hungry" but that would be too much to tell. I don't know how to add more calories/fat as I having tried all the suggestions they have given me. (Though I added a new trick recently that I thought of myself- I have been giving her a fancy shot glass and asking her to shoot heavy whipping cream!)

To look at her, well, I think she looks fine. Just a regular eight-year-old, a little tall for her age. Really quite pretty. But all messed up on the inside... Oh, but her heart- now that is something else....
Tonight during prayer before bedtime, she crawled up into my lap and said, "I need a hug! I only got two hugs today and I need fifteen!"  But she wasn't really taking a hug from me, she was giving one.

I went to mass last Sunday and listened to people cough. It was like a concert in the round. First one deep cough on the right, echoed on the left, then another further on, a baby in the back, and then the one directly behind me- setting the hairs on my head on end. The couple to the right of us and down two pews, was a regular duet of coughs.  And so it went on.  I even saw the priest cough on his hands during the prayers of consecration... could he not cough on his elbow because his vestments are holy? Of course we were in his line for communion.

I always notice the coughs of others, it is no background noise to me. But this particular Sunday I was more keyed-up because I had the pleasure of watching the local news a couple days before while I was waiting at the hair salon. It was all about the reported, and even larger unreported, cases of the flu this year.  And, also I knew of several families in our homeschool community who were down and out with either the stomach flu or the influenza.  Nobody wants those sicknesses in their house. I actually fear them.  And so I prayed, and prayed, and prayed again that the Lord would spare us the flu and other serious sickness this year. At one point in the mass I realized I had really stepped away from praying and was getting closer to panicking. Deep breath. Put it into the Lord's hands and walk away... that's all you can do.

At Anna's last appointment in mid-December her lungs were declared clear and her lung function test was good (though not as high in numbers as previous times). However, there was concern when it came to her weight gain- the concern being that she had not gained weight in the last three months. Because CF is also a condition that affects digestion, weight is watched closely. In the past, before pancreatic enzymes were available to be taken orally, children with CF would practically starve as they could not absorb the nutrients they needed. Studies have been done that directly link weight with lung function. The skinnier you are, the more your lungs suffer. Anna's weight gain had slowed over that last year, but not too much was said because she is quite tall for her age and that throws off the calculation of the BMI (Body Mass Index), which is how they keep track of overall growth. This time however, I saw that the nurse and the nutritionist were concerned. The nutritionist came flying into the room in a bit of a flourish once she had figured the BMI, and started spewing ideas and calories, and terms at me. Yet, no one had told me the numbers yet and I didn't understand where she was coming from. It was a bit alarming. In the end, it was explained to me that the goal is to keep Anna in the 50% range or above for BMI. She was calculated at being in the 30% range at this time, lower than she has ever been.  When it comes down to it, she would need to gain about three pounds to make it back up to the fiftieth percentile. That doesn't sound like much I know, (you could take that off just one of my thighs and not make a dent) but I guess it is a big deal for Anna.  So, we are pushing even higher calorie foods more often throughout the day in hopes of gaining. Anna knows she needs to eat more, but so often I hear this phrase, "I am full." Sometimes she will spell it for me, " I am F-U-L-L!!" And then I ask her to take two more bites. It doesn't help that she has a head cold right now, it is hard to eat when you can't taste anything.  We have gone grocery shopping together so she can pick out the snacks she likes, yet when I ask her what she wants for snack in the afternoon, nothing sounds good to her....

So, that is where we are right now- avoiding the flu by prayer, disinfectant, and isolation AND trying to push high calorie foods when she is never hungry.

P.S. By the way, she had another blood test for her liver in early December, of the three elevated numbers- one was back in normal range, one had dropped, and the other stayed the same. The doctor felt that the drop in the two indicated that things were headed in the right direction. She will have another blood test in late spring.

October. This month saw Anna turn six years old. Six years old.... I can hardly remember her with a full head of blond curls. Now her hair is long and straight, but still beautiful.  I took her to the portrait studio today, she rocked it in her sparkly purple dress.  Amazing Anna.

The day before her birthday (which she had been anticipating for at least six months), we took her to get her blood drawn. "Happy almost-birthday Baby! Let's go and have you poked."  I didn't feel too good about that, but she took it in stride when I told her where she was going, and was wondering what kind of band-aids they would have this time.  Wow.  The doctors were checking her Vitamin D levels. She had been low in the spring and we had been double-dosing her for several months. I guess there was some concern that she would not absorb the extra, but it turned out she had the highest level she has ever had.

At her appointment with the CF staff there were no issues for concern. She had gained weight (Yes!), her lung function test was 125% (not sure how you do that, but it's all good!), and even the cold she had that day never went to her lungs.  We waited the week for the throat culture and got the call that she was clear. Yes!  This time last year was when she was diagnosed with pseudos... and that was devastating...at least to me.  So, that means we made it through the summer with no nasty creepy germs taking up residence in her lungs!

I was recently talking to someone with lung trouble who goes to Florida in the winter to avoid colds and have plenty of fresh air off the gulf to breathe.  Interesting....  He had also done research on how fast and far coughs and sneezes travel, especially in small spaces.  Please, whoever reads this, be aware of how you deal with your coughs these coming cold months, keeping aware of the spread of germs to others.  Every time I touch my nose, even to itch,  I sanitize my hands.  Every time we leave a store, church, bathroom, or any outdoor place, we sanitize our hands.  I think it helps us stay healthy.  I had a friend comment to me a week or so ago, "How come you guys never get sick? " Awareness. Caution. Prayer.

As we go into "cold and flu season" I hope that you and yours stay healthy. Please pray that me and mine are healthy too.

Summer with Anna....

Sometime last summer Anna picked up pseudos. Was it at the beach that I was uncomfortable going to? Was it our backyard pool without enough chemicals? Was it being barefoot in the yard? It could have been anywhere, anytime, and we will never know.

So, what can I do differently this summer? How can I protect her from those tiny germs I can't see? Don't go to the beach? Dump excess chemicals in the pool? Forgo putting her in sandals? Pray harder?

This last weekend we went on an overnight at a camp ground- cheap entertainment for a large family and got the kids faces away from a screen for a least a day. As I am packing up I am thinking, "What am I doing? This is crazy? Why am I taking Anna camping? You can have a perfectly great childhood without ever going camping, lots of people do."  But we went, for the memories (oh, and did we have some stories to tell). Did I put her at risk for no reason? Was that a bad choice? If she ends up with pseudos in her throat culture in September will I feel horrible for taking her camping? Or, will the pseudos be the result of her walking through the puddle outside of church this morning and then taking off her shoes and playing with her toes on the way home?  What about the theme park that my children have never been to,ever, that I think I should be taking them to so they have that childhood experience.  Will we get the germs there, if I have the guts to take them?  And the vacation bible school that I signed her up for this coming week? I am crazy nervous about that.

But Anna, she takes it all in stride. One friend recently pointed out that Anna seems to see the silver lining in life. Anna told me that she knows her right from her left because she broke her left arm last fall- now she remembers which is which.  She regularly prays for "all the people in the world that have CF, that they are doing good like me."  When another young girl asked her about why she was taking enzymes before eating, Anna explained, " I have CF and it is SO awesome because I can eat ANYTHING I want!"  One morning I found her standing in front of my full length mirror with her purple therapy vest on admiring herself. When I asked what she was doing she said, "I think my vest looks cool," and then did a little half-spin to admire herself from the back.

Anna is amazing.

Please continue to pray for her because I really think your prayers matter.  Pray for no pseudos this summer. Pray that she gains more weight, as that was a concern at her last appointment. Pray that she keeps up this great attitude and always sees that silver lining (the one I can't see), and that the Lord gives her a long and beautiful life.....

For days, Anna had been complaining about her tooth being loose. I, too, was uncomfortable with it, for two reasons, I think loose teeth are disturbing, and it meant that my baby girl wasn't much of a baby anymore. Based on my misgivings, I think, Anna was also not happy about her tooth being loose.

One night before bed she said, "I don't want to lose my tooth because then I am not a baby anymore and I like being a baby because then people hold you all the time and I like that." She went on in the next breath however to say, " I don't like to be the baby of the family. It is not fun. "

So, I guess, like me, she has conflicting emotions about her own "growing up." But every day, I thank the Lord for His gift of her good health so far, and I follow that up with a prayer of petition, no, really it is begging, that He continue to bless her with health and I push it further to "a long and full life."

Last week Anna had her regular check-up and passed with flying colors. Her pulmonary lung function test showed her at 98% lung capacity.  Her BMI continues on a the proper curve. My only concern was darkening circles under her eyes which the doctor says could be allergy related, but she shows no signs of allergy. But the real news is that the throat culture came back with no pseudos again and that indicates that they are gone! (The nurse did say there was another critter on the swab but not a concern and not needed to be treated. I think there will always be some critter.... but hopefully never one of the problem-causing ones again.)

Anna loves to do her therapy, especially in the afternoon or evening because she is allowed to use the computer and likes to play Jurassic World Park with  her brothers.  You see, she gets to control the game while they all watch and advise. It is kind of a bonding thing with the kids in the family. She usually starts asking me about 3pm if she can "do therapy. "  I actually have to tell her no because it is not the right time of day. She is so disappointed.  I am not a fan of computer games, but if it makes her look forward to therapy, then I must concede. The object is to form a life-long habit of taking care of herself and any positive thing that we can link to her treatments may help her to do that.

In other news, about seven weeks ago the entire family auditioned for a play- and we were all cast!
But, it put me in a "first-time" dilemma... how do I let the director and cast know that Anna needs to be protected from people with colds and sickness without ostracizing Anna by making some public announcement?  I didn't want to stand up at a rehearsal and say, "Hey, please keep your distance from my child, in fact ALL my children, if you are sick." How would that make Anna feel? I could have her leave the room when I made the announcement.... but would they all treat her differently after I told them?  I want her to lead a normal life and not have people afraid of being near her.  Still, I felt as her parent, I needed to protect her and be an advocate for her health.  After thought and prayer, I decided to tell the director and together we decided to make a general announcement to the cast that if anyone is sick to keep a distance from other cast members as a courtesy- which is needed to keep a cast healthy anyway.  Though I was unable to convey the seriousness of the situation to the cast, I felt that I at least had made an effort to protect Anna without singling her out.  It was a fine line to walk. At her last appointment I spoke about it to one of her team members who is a psychologist and she said I handled the situation well!

By the way, if anyone is interested in seeing us all on stage, the play/musical is next week at the University of St. Francis in Joliet. Check their website for information and tickets!

Anna the World Traveler

It was a big deal. It was an important learning experience. It took a lot of work. We had a great time.

After almost two years of preparation, fundraising, and praying our whole family traveled to Rome over the holidays to participate in an international conference for children's choirs. The reason I italicize "whole" is because at one point we did not intend to take Anna and her brother, Luke.

"They won't appreciate it, they are too young," I reasoned. "They won't remember it," and "They will be bored," I thought. "It will be cheaper for them not to go and they will have a great time at home with relatives," I figured.

All those thoughts, each holding some merit, didn't really compare to the deeper reason that I didn't want to admit out loud- I didn't want to take Anna on a nine hour plane ride, deal with getting through customs and security with all her medications and therapy devices, and expose her to crowds of people carrying their winter germs.  I was afraid. It seemed too big of a task. I didn't want to go through the hassle.  I guess it is pretty clear that I was focusing on me.

But my husband kept on insisting we go for it. A good friend pointed out that Luke and Anna would always feel left out of the family stories just like they would be left out of the photos. An amazing benefactor stepped up and offered to pay for their tickets.

I talked to the CF staff and we began to plan a way to do therapy while traveling that would not include taking her heavy, expensive vest unit.  Several months before the trip Anna and I began to practice using a small, hand-held device called an acapella to replace her vest system. A person breathes in and out of the acapella in a specific way with timed breaths for a total of 20 minutes. It takes concentration and effort far beyond just sitting in the vest while it shakes and you watch TV.  (sidenote: when Anna broke her arm at the end of November we used the acapella for a week straight until she saw the orthopedic because I was concerned about her using the vest- so she got pretty good at it!) She also switched to a puffer for abuteral instead of the power operated nebulizer.  So, in the long run we went to Europe "unplugged"! ( Oh, but we purchased an electric teapot to boil her acapella device, and that did have a plug! I kept wondering if security would ask us why we had a tea pot in her suitcase, but they didn't. I guess they have other things to worry about.)

Despite my prayers for health for the trip, Anna did have a cough before we left.  Her doctor had given me an antibiotic to take with us, and the third day out, I broke down and gave it to her.  I didn't want to end up in a foreign hospital. She improved.  I was very proud of her when she used the acapella and had no entertainment to make it easier- the wifi wasn't working or the tablet was on low battery. She just sat there as we both breathed to my counting, "Big breath in two three, hold two three, blow two three. Again..." She even did her therapy in such places as the airport, the bus, and waiting to see the pope at Sala Nervi auditorium!

I was concerned for the first few days because she didn't want to eat.  I thought she would be fine in a country filled with pasta and pizza.... maybe it was that her stomach was still unsettled from the massive vomiting she did on the plane? Thankfully, she finally got used to the food and wanted to eat, and then began to say she was hungry and ask for more food, which she never did back home.( I wouldn't have to try to explain massive weight loss to the CF staff after all! )

So what I learned is- dream big, don't be afraid, work the plan, God will provide, and believe in Anna- she can do pretty amazing things!

Prayer

Thank you for your prayers!  Anna's throat culture has come back clear! That is her second "clear" since her round of antibiotics in October.  She needs one more "clear" to be declared free of the pseudos... and that culture won't even happen until March. Now, that is a long time to wait, but we will remain hopeful.

Have a blessed Christmas and thank you for your gift to us- your concern and your prayers.