7-31-08

        Well today was my first day going out in Public with the NG tube.  If I am being completely honest I really struggled in the beginning with feeling self conscious and ugly.  But over all it went well.  I did have one person laugh at me, and then some funny glances but I just have to learn that that doesn't matter, what matters is what God thinks of me and He loves me so I have nothing to worry about.  I met my new PCP (Primary Care Physician) today and I really like her, she is very nice and caring and I think it will be a good fit. :) 

Thanks to you all who have gotten on and read the blog and left comments, its so nice to have all of your support and thoughtful notes!

Kylee

The feedings and medications seem to be working.  Her ankles are actually visible at this point.  There is still some swelling, but at least she will be able to walk now.  She has an appointment today to meet her new internal medicine doctor for the first time.  This appointment was set up 2 months ago.  Please pray she will have wisdom and great insight on how to manage Kylee's disease.  Dr Liebo has been an excellent pediatrician, but we are excited about the possibility of a new point of view.  We are still fighting Kaiser for acupuncture coverage.  We have some inside info we will hit them with if they deny again so we are hopeful. Thanks for the notes of encouragement to Kylee I know it means a lot when you post comments on the blog.