so the squeaky wheel gets the oil.

Dr. K emailed me tonight around 7 pm to tell me that the NIH doctor had spoken to her today.  Of the three levels that were high initially in May two have resolved and one has not.  So we will restart the steroids for her IBD and hopefully not have to move on to stronger anti-inflammatories.  Best news is that they truly think her gut disease is not at the point of needing immune suppresants and we are so happy for that.

The new news is that they are really pushing to have her see a motility specialist because they think the gut pain is due to her nerves being messed up.  So they have given us the choice of going to New Orleans or to Columbus, Ohio.  I believe that her motility issues resolved when she was younger but they think it is still a problem.  So they will be making the referral and we will just wait until all the information comes in.

Both motility doctors are familiar to me from when Macey was younger and had to have her cecostomy tube for several years.  We have done a good number of motility tests both here in Macon and in Atlanta but there are some more specialized tests that only certain motility clinics are equipped to do.  

So steroids will restart tomorrow and hopefully her energy and stamina will return.  Her weight has leveled out at 100 lbs even and so once her stomach pain is gone she will be pretty set for now.

Oh but by the way she does have a sinus infection right now and is on antibiotics for that.  Never fails.