bil·i·ara·noia
 noun \ˌbi-li-er-ə-ˈnȯi-ə,\

 paranoid thoughts that cause you to believe that your baby's eyes are getting yellow and therefore his bilirubin is rising.

 The past few weeks I've been having what I call "Bili-aranoia". I've become convinced that Philip's eyes are getting yellow. I continuously ask family "Do you think his eyes are yellow?"

"Am I crazy?" "You don't see it?" 

To which everyone says "Yes, you are crazy" LOL

I'm that crazy lady in the store that comes up to you and asks "Can I have your honest opinion on whether my baby's eyes are yellow. Go ahead tell me the truth." 

Ok, Maybe I haven't resorted to that yet but it does sound like a good idea right? You know, to get an unbiased opinion? LOL

We did see Dr. Prince last Friday and I brought it up to him and he didn't see it either, but he did blood work anyway. He said that is what will tell the truth. 

We then saw Dr. Webster the GI doctor on Christmas Eve.

She gave us the results and his bilirubin went up from .07 to .09. She said that was within the margin for lab error so she doesn't even consider that a rise and wasn't concerned at all.

Also the fact that his liver numbers decreased significantly, she

said that tiny rise in bilirubin would not cause his eyes to yellow unless I have some super bionic vision. LOL

She said he is doing great! What an amazing Christmas present!

She also did not see the yellow in his eyes. 

So I guess I'll just have to get used to this new sense of paranoia  that something is going to go wrong. Things are going so well I just don't want something to happen to that.

With the New Year upon us it's hard not to reflect on all that has happened this past year. What a roller coaster ride it has been.

Saying goodbye to 2013 will be bitter sweet. We welcomed beautiful Philip into the world and expanded our family. Danny turned two, became a big brother and has grown in leaps and bounds. We received the terrible news about Philip's condition. He went through surgery and is doing great now. We learned how strong we are as a family, a couple and as individuals. We learned how much support we have in family and friends. We learned how to enjoy the small things more, and to not take those small things for granted. We learned the power of laughter and a great sense of humor. Mostly we learned the power of faith and prayer and positive thinking.

This year could have been so much worse if it wasn't for every one's support and positive thoughts for Philip, us, and our family. Thank you to everyone again for all of that.

We hope this coming year continues to bring good health, happiness, laughter and love to everyone and their families.

Have a Happy and Safe New Year!

Love and Good Wishes

Kim, Dan, Danny and Philip

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.