Friday, May 15, 2009

Ashton's appointments were three weeks appart this time rather than four due to he doctor not be able to see her this month... so we saw a different doctor. This lady is the head of their CF Center. Ashton's weight and lenght were perfect, 15 lbs 3 oz and 25 inches.. this is a little over a lb and around an inch in three weeks! The goal is for her to gain between 15 and 21 grams per day and her average was 23! They did a cough culture which we should get the results of next week. They wanted to test her vitamin levels, but I told them that since I took her out of daycare, and she is no longer taking a bottle (I mixed the vitamin in her milk for school) I had been trying to figure out a way to get her to take it. The first week I was home she barely got it at all... but this week I figured out she will still eat her cereal if I mix it in. So, they are going to test for that next month.

There was one thing that was kind of disturbing to us this time. This doctor indicated that they would run the test for pancreatic sufficiency (to ensure that she is still digesting her fats properly) annually. We were concerned about this because we were told in the beginning, either you are sufficient or you aren't, based on your strain, and it doesn't change. You don't "become" insufficient. This doctor indicated that may not be the case. Since so few people with CF are sufficient to begin with, there is not that much information out there, and the possibility remains that some strains could progress to that eventually. The key to this is, if you will remember, Ashton's strain is very, very rare. Even more so than we thought. We knew there was only one case study, that one being in Czeckoslovakia (not sure I spelled that right, but you get the point), but we figured there were other cases that had just not had a case study done. Well, it seems that is not the case. She is only the second person in the world to have her strain. That being said, they really have NO CLUE, even less of a clue than we first though, how this is going to play out. If she were to start to become insufficient, testing annually will catch it early and allow us to take action before she begins to become malnurished. We can also look for the signs everday and have her tested if we feel necessary. This adds a whole new spin on things, as I had given up analyzing every diaper because we were under the impression she was and would stay sufficient. We are very thankful that the doctors are so in touch so as to not take it for granted though. I'll post about the results of the cough culture as soon as we get them. In all, this was another very positive appointment. Praise Him!

No comments:

Post a Comment