We met with E's CF team again this month. She is doing great and growing like she should be, weighing 12 1/2 lbs now. No changes on her enzymes or meds...still taking Axid twice a day and 1 Zenpep 10k capsule before meals. Her last 3 throat swabs have grown staphylococcus aureus, which is one of the most common bacteria found in the lungs of CF patients. It's not something that needs to be treated, though. They do the throat swabs to check for pseudomonas aeruginosa because that is the one that causes the most problems. Luckily we don't have to worry about that one yet!
We signed all of the consent forms for E to participate in a clinical trial called BONUS: Baby Observational & Nutritional Study. It is a research study conducted by the Cystic Fibrosis Foundation where they look at factors that may contribute to poor growth in babies with CF. Everything will be done at our regular clinic visits and it is pretty much the same stuff we normally do there anyway. But instead of weighing her once, for example, they weigh her twice: once for her clinic records and then once for her research records. Same with her height, pulse ox, throat swab, etc. They also put her in this pea pod that gives a more accurate measurement of her body composition. She was so cute in there just looking around and smiling at us through the glass!
When they first mentioned this research opportunity to us, Ryan and I were both very much in favor of doing whatever we could do to help. I hope that the results of this study will help someone else's baby one day just like the results of other research studies have helped us keep E healthy so far.