JJs Journey: Its been a crazy couple of days. We went from the doctors telling us JJ wasnt going to live long to he seems better and is much happier. The doctors drained more fluid off his belly & he is just the happiest we have ever seen him. We had another care conference yesterday. The doctors told us they think they may have found a diagnosis for JJ (that tells us the reason why he was born this way) They think it is MCAP (megalencephaly-capillary malformation syndrome) and its a disorder characterized by overgrowth of several tissues in the body. Its primary features are a large brain (megalencephaly) and abnormalities of small blood vessels in the skin called capillaries (capillary malformations). Research doctors in Seattle, Washington contacted JJs doctor and they have agreed to help confirm it. So hopefully by next week we will know for sure. When I heard this news I just thought okay we have a diagnosis but how does this fix him so we can go home? Well I think we still have a while before we get to go home bc now the masses in his liver that they found have gotten extremely bigger within the past month. They say it looks like Hemangioma (lesions or mass) but it is growing like a cancer. We are praying it is not a cancer! The doctors say if it turns out to be a cancer theres no way he will be able to survive it. In order to find out if it is a cancer they will take a camera inside of his stomach to see it & if the doctor thinks he can get a piece the lesion to remove to be tested then he will try but if he burst it JJ will bleed and they will have to remove part of his liver. This procedure is so invasive & dangerous but its our only way of knowing. The surgery is suppose to be Tuesday or Wednesday. I ask everyone to pray for a safe surgery! Here is our happy baby! I finally got him to smile at me :)
Posted on: Sat, 20 Sep 2014 23:21:23 +0000
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