Our date for Addy's cardiac MRI & bronchoscopy has been set for August 12th. We will have to be there at the ungodly hour of 6am. They will do the bronchoscopy 1st about 8am, then anesthesia will take her for the MRI from 10-12 o'clock. We will expect to be in radiology recovery for most of the day but they said if she does well she should be able to go home that afternoon. It makes me want to vomit to think about the possibilities that can happen in the 4 hours that she is away from us. We know she needs this though. As she gets more active, (i.e. closer to talking all by herself!) she becomes more out of breath and labored with her breathing. She often has a dusky color to her lips that improves as soon as I pick her up and make her settle down. How much of this is normal? Who knows.... we know she will have some degree of activity intolerance, it doesn't seem to hold her back so that's a good thing.

On the other hand, this will take place exactly one week before Addy's 1st birthday! We are planning a little party to celebrate this occasion with friends and family. One year ago, we didn't know if we would get to celebrate a first birthday with Addy. We had no clue what the future would hold. While that remains unchanged, the last year has been one wonderful worldwind as we have gotten to know our baby and rejoice in every step she takes! I'm so proud of my baby girl, she is amazing. I have realized that the fear of what will happen in the future will never go away. I just have to love her every day that she is here and know she is meant for big things.