Officially a CCHS kid - Congential Central Hypoventilation Syndrome

Yes, we had our conference care meeting yesterday.  Dr Venkat mentioned about posibilities of a trach even though we do not have your results back yet but regardless, what's needed is still the same.  Your issue is your breathing issue, regardless if you are positive or negative, we still need to fix that issue.

Dada was supposed to fly back home tonight, I still remember, it was around 4pm, I took a shower and almost ready to head to the hospital.  I was looking at Facebook on my phone and guess what... this is what Joel Osteen posted "Don't let closed doors convince you to give up, keep moving forward and keep this forefront of your mind, Victory is in my future".  About less than an hour later, dada called, as soon as he said "Hello", I already know that the results is positive, he sounded so sad and depressed because we both wanted the results to be negative.  He kept quiet and went to the airport without saying a word.

When I saw the message from Joel Osteen, I already know that God is preparing me, giving me a heads up that you have CCHS.  I really don't want that results.  Can we just turn back the clock where everything is perfect and normal?  Why us?  Why our family?  Why you? 

How can God make such a cute baby like you suffer?

You look like a cute little puppy on your belly...