"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.