Undiagnosed

Undiagnosed sucks! I never in a million years thought I would ever hope to have a doctor walk into a room a say ma'am your child has (insert diseases/syndrome/chromosome anomaly here). 4 years ago when we realized that Deklin had something more going on than just your average baby sickness we started down the long, scary, frustrating road of genetic testing. The first test we did was for cystic fibrosis, his docs were sure that was what was plaguing my little man. They were so sure in fact that he has now been tested 4 times for CF (because one negative test isn't enough)... he doesn't have CF. I remember waiting for the test results to come back and just hoping and praying it would come back negative, and being so relieved when it did. At some point over the last 4 years that thinking started to shift I started going back and forth between wanting this test or that test to be negative, but at the same time hoping it would come back positive. Feeling both relieved and discouraged when it came back negative. It's not that I want my baby to have some terrible disease, it's the fact that there is obviously something wrong with him and I want to know what it is. It is so frustrating to be told over and over again "there is something wrong with him. We just don't know what, or how to treat it". I am so tired of  test after test coming back negative or inconclusive. Having  some test or lab come back with something off, but no one knows what it means. 

Deklin sees genetics again tomorrow...I am both looking forward to the appointment, and dreading it. I want to know what it is we are fighting. I am under no delusion that once we know what we are dealing with there will be some magic pill that will cure him instantly. I just want to know what his prognosis is, I want to know what we are dealing with so that maybe we can better manage him, I want to know every time he regresses or we add a new med or medical device if it will be our new normal or if it is just a temporary set back. I JUST WANT TO KNOW.

For those of you that got through my long rant stay tuned tomorrow for an actual update.