CF Day

Since January, Bethany has been going to the CF clinic monthly. She usually goes every three months, but her weight had started dropping and her pulmonary function tests were down so her doctor wanted to see her every four weeks. Each month we would go in and I would hope she would blow really well (PFT) but the numbers just didn't go up. It isn't that they were low -- actually they were pretty good for a kid with cystic fibrosis, but her FEV1 had dropped some. I didn't really think it was a big deal, but her doctor just didn't like seeing her numbers go down and I am glad he is so conscientious.

Her weight had also dropped to the 5th percentile and lung function is directly related to weight -- I don't really understand that at all. So we had been working and working to get her weight up but it barely moved. I will never understand not wanting to eat. We all are just baffled by that, but she just hardly ever wants to eat anything. I pretty much have to push food on her all day long to get much of anything in her. We had tried just about everything we could think of to get food in her, but it was just never enough.

Finally, one day I had a thought. We had talked about getting season passes to Kings Dominion this summer, but hadn't bought them yet. All the kids love to go and it has been several years since we got passes. Then an idea hit me. I would bribe Bethany. Something I never do with my kids. I told her doctor today that she has made me do things I never would have considered doing. I don't like to give my kids rewards for doing what they are suppose to do. It goes against my grain. But, somehow it is different with Bethany -- her health and quality of life depend on her doing something she really dislikes doing -- eating. Sometimes when she eats her stomach hurts, sometimes it causes cramping and nausea and most of the time she just has no appetite.

So, I told Bethany that if she gained a certain amount of weight I would get her a pass to Kings Dominion. She actually jumped on it and started to eat a little more. That didn't last long, though, as there is not much that makes Bethany willing to eat. So, she kind of tapered off. Then as it got closer to summer and we talked about it more and some of the older kids got passes she started working on eating again. 

Today at the clinic Bethany had gained all the weight I asked her to gain and is now in the 25th percentile for weight instead of the 5th. She also blew much better and was only a few points from her highest reading. She did so well and she even looks healthier -- and we don't have to go back for three months! It was a great visit. 

Strangely enough, as we waited for our car to come, Bethany asked if she could get something to eat. I couldn't believe it. She actually asked for food. So, we went in the hospital and I got her the chicken sandwich she wanted with a drink and she ate almost every bite of it. I don't know if she did it because she was so thrilled that she had gained and she wanted to keep going or she was just hungry. I just hope this can last a little longer  -- especially after the season pass is bought and she has no more incentive to eat.