CHARGE on...

Hi little buddy,

Overall it has been a pretty quiet weekend.  That's not to say you haven't  been working hard on growing and breathing on your own.  If it wasn't for that gunky stuff that keeps blocking your nose and making your numbers drop we would be in the clear.  I know it has to be frustrating to be sound asleep and then all of the sudden not be able to catch your breath.  Sorry for all the suctioning but it's the only way mommy and daddy can get that yucky stuff out and let you get back to breathing easy.  So for now we will wait as we have been to see what the next step will be and if any of the ideas being thrown around will help get rid of that pesky stuff.

                  I swear you are smiling in this picture

Mommy and daddy did have a visit from Dr. G on Friday night.  Dr. G is the genetic doctor that taught us about CHARGE syndrome when you first arrived.  Dr. G stopped by to let us know that your blood work came back and confirmed the clinical diagnosis the doctors have given you.  Now this doesn't change the course of action that the doctors will take one bit but she did have some interesting information.

 Dr. G sent away some of your blood to have special computers analyze your DNA.   I know that you have no idea what DNA is but basically it's a recipe that explains how to build a little boy.  In most kids with CHARGE syndrome there is a letter missing or a word misspelled in that recipe.  They call this a mutation.  Your mutation falls at a very important spot.  In fact you are the only documented case of this type of mutation.  The way that mommy understands it is that the spot your DNA is different is a spot that is in charge of regulating a lot of different things.  It's kind of like a whole chapter got ripped out of your recipe book.  This explains why you have faced so many obstacles in so many parts of your little body.  More importantly it confirms you are one of a kind and truly a miracle.

Dr. G asked mommy and daddy if she could write a paper about you.  She thought you were very interesting to start with because of your heart but now you may be the most unique little boy she's ever written about.  We of course agreed because we want to make sure we can help any other super special kids and their doctors learn about CHARGE syndrome.  It's amazing that at 10 weeks old you are teaching some of the best doctors in the world lessons.  Mommy and daddy love when you prove the doctors wrong (to be honest I think a lot of the doctors here are very happy that they have been wrong about you).

Mommy can't promise what the future holds but she can promise that we will do our best to face it together. Mommy and daddy are so proud of you everyday and amazed by your abilities.  I don't have an explanation of how you are able to do what you can do but I'm pretty sure it has to do with your strong will.  So for now we will CHARGE on and gear up for the start of another hospital week.  We will take things one day at a time and follow your example of determination.  Keep up the good work buddy.  I know you will keep defying the odds and being the exception to the statistics   You are an inspiration to so many people.

Mommy and daddy love you Connor.

-Mommy