He had to be on about 10meds daily to sustain life. He had 7 surgeries between 2009-2011. He had to be fed through a Gtube in his stomach. He was deaf and blind and so disabled he couldn't even hold his neck up. He was wheelchair bound. He had the best smile!! He ended up rejecting his feeds slowly and two months before he passed he got worse. He stopped eating and we could no longer push food through gtube so Hospice came in home. He withered away as time went on. His stomach and digestive system shut down causing him not to eat and then he had kidney failure. He went 4wks without any food or drink but was on morphine for any pain. He got so tiny you could see all of his bones. He passed away in a traumatic "drowning" on fluid in lungs from kidney failure. It was horrible and the hardest thong we have ever witnessed. He suffered his entire life but we took him everywhere so he could experience life! He went all over our home state and to Disney World on a Make A Wish trip and got to experience so much at such a young age. He passed at 3.5yrs old. He's free of pain now. But his baby brother looks just like him and we can tell he knows he is gone. He'll look at big brothers pictures and smile! It's amazing and yet so sad. Get educated on CMV because it is most fatal when a pregnant women catches it just like you would catch the flu.