I hear you both! Why does it sometimes feel like some people get whatever they want while others fight for everything??? Luckily, Owen was given a really feisty mom, so I know I will figure it out somehow. There are just times when I feel like ditching the doctors we have on our "team" since they haven't ever really done anything to get Owen better. We wind up doing all the thinking and questioning...
<br />But, I wanted to say that I called our dear friend, Owen's karate teacher, who has CF to ask a few questions about providers. He gave me names of people he has worked with for years and they were very responsive to me today! They are at a CF center and seem to have the right set-up, in m opinion. We shall see. The nurse there said she wants all of our records and they will start with an chest x-ray and PFT. She did say low sweat chlorides are not helping with a diagnosis but she continually thought Owen sounded very interesting and in need of a good CF work-up either way. And, she was really easy to talk to, which is often half the battle. I will call tomorrow to schedule, hopefully we get in before summer!
<br />I am still waiting to hear from GI. I am wondering why they are so quiet right now, usually they call really quickly and now it has been a week since I told them about the weight gain on Creon. It makes me nervous and I cannot help but think they might be back peddling a little bit when they so quickly ruled out CF and other possibilities. Should be interesting to hear what they finally say, but I would really like to just get out of there, especially if it works out at a CF clinic. Oh, and the nurse at the clinic said she thought they might treat Owen even without a dx, I would love to finally hear the name of the cause of the problem but that makes me feel pretty good.
<br />Ok, thanks again for everything, it makes me feel so much less lonely in the process <img src="i/expressions/face-icon-small-smile.gif" border="0">
