Congenital Malformations Registry (CMR)

So we received a letter in the mail a few weeks ago that Philip had been "reported" to NY State's Congenital Malformations Registry (CMR). Who knew there was such a thing. The role of the registry is to help better understand the extent and causes of birth defects in New York State's Infant population.
Hospitals are required to identify and "report" children who may have congenital malformations.
They include material to make you away of services that may be available to you and your family.
I understand the importance of such a thing and feel like its needed but I have to be honest that I was a little taken aback when I received the letter.
Now It  wasn't a surprise that Philip's disease is considered a birth defect but I felt maddened by the use of the word "report" in the letter. In my head being "reported" always came with a negative connotation. It brought up feelings from the beginning that I did something wrong to cause this. Also the fact that his name is out there on a "registry" (Maybe not literally but figuratively). It just makes me think of the sex offender registry or that he was being banished to the island of misfit toys.  I know a terrible thought but these are the things that first came to mind when reading the letter. No one wants to feel like their child is less than perfect and this made me feel like, well now it is permanently documented that my sweet perfectly imperfect baby is, well, imperfect.

That being said Philip continues to be doing great. We get more blood work the end of the month and we will see if his levels are still going in the right direction. He took his last dose of steroids Friday  night so that was an exciting day for me! I remember when he had surgery and they said he had to be on the steroids for 90 days and we said Wow it will be almost Christmas when he finishes. We couldn't ask for a more happy baby.