Currently Noah is approaching the 6 month mark and the doctors are actually surprised that he has made it this far. He hasn't developed any absent reflexes like his sucking or swallowing. This causes his breathing to be very strained and he coughs, is congested and stops breathing sometimes. He doesn't track with his eyes at this point, can't see or doesn't register what he sees. We are waiting on further hearing tests but we think he can hear but he doesn't respond to sounds too often. He has very high tone in his arms and legs and is very floppy in his trunk. He used to be able to hold his head up when on his tummy but he can't do that now. His vomiting is under control, so that's one less thing annoying him. He has become very irritable and is upset and/or cries 70% of the time he is awake. In all honesty he is not happy and it breaks my heart to have to see him go through this everyday. But we do have hope....hope that Noah wont have to endure his suffering for too long. It is a terrible thing to have to hope for, but we love our baby boy so much and just want what's best for him. We want him to be free.
Of course we will continue to take each day as it comes and try to hold our heads up. Very, very rarely Noah will make a little smile or laughing noise (usually when he is asleep or just waking) We just have to make the most of the time we have. Aaron and I were already pretty strong, positive type people but we have really had to dig deep and just keep on digging :) We really couldn't have stayed so "sane" without the help of our family and friends. We love and thank each and everyone of you xoxo