Thursday, December 13, 2012


Crazy times!  Getting the keys for our new house tomorrow!  It will be nice to give my mom her house back and be on our own.  It has been quite a roller coaster ride.

So Isaac had 3 different tests for Cushing's Disease.  It is very rare, especially in kids, and very difficult to diagnose.  One of the tests for Isaac was positive and the others were normal.  The doctor thinks the one was a fluke and it is not likely that he has Cushing's.  He has a lot of symptoms but hopefully they are just coincidence.  He has grown some since he had the year of not growing (taller) and gaining weight quickly so now we are going to just recheck him in 6 months and see where he is at.  We will have his heart rechecked in the summer too.  Isaac's insulin growth factor test came back normal too.  For Jerry, that test is very low.

Jerry is also on hold until at least spring.  He has a very low IGF1 but normal pituitary from what they saw on the MRI.  His heart looked great on the MRI too!!  I need to post a picture of him holding his first normal EKG!  He is off of his enalapril medication but still takes baby aspirin.  He is fine off of the heart medicine now but the doctors cannot figure out why he has always had this awful reaction to missing a dose and it was the same when we went off of it.  Since they can't see why it would be I kept thinking it is just a fluke and it can't really be connected...well, after 6 times now...I am sure it is connected to missing enalapril.  He would get super tired, very nauseous and sometimes throw up, some headache and then sleep for hours crying on and off and then get over it.  Sweating too.  Very strange I guess.  Kind of bothers me that no one knows why he got that way but he is really fine now off of it.  The scar tissue they thought would not go away did!  He does still have some remaining where the surgery was and it has to be monitored but really this is great news!  He still is not gaining weight or growing well.  He at some point will probably have to redo that test where they could not get the IV in.  Ugggggggggghhhhh!  But for now we are just going to settle in our new house and keep enjoying preschool!

That's about it for now.  Thanks to everyone for checking in with us!  Merry Christmas!