Saturday, February 9, 2013

roller coaster ride.3-MCC Disorder


his battle wound from surgery
it goes around to his mid back
well Rayden is looking a little more puffy over the last few days then he has been, they tested him for infection but they did not see anything, so they called infection control, they want a xray of his abdomen to make sure there is no pockets of fluid built up, if there is the will insert a needle into his abdomen and suck it out, and if there isn't then we keep searching for why he is a little puffier the last few days. we also found out one of the many long term issues he is going to have he has a rare thing called 3-MCC disorder  its an inherited disorder in which the body is unable to process certain proteins properly. People with this disorder have a shortage of an enzyme that helps break down proteins containing a particular building block (amino acid) called leucine. this condition, which can range from mild to life-threatening, include feeding difficulties, recurrent episodes of vomiting and diarrhea, excessive tiredness, and weak muscle tone. If untreated, this disorder can lead to delayed development, seizures, and coma. Many of these complications can be prevented with early detection and lifelong management with a low-protein diet and appropriate supplements.this happens to 1 in 36000 babies so of course it happens to him right. but anyways i am sure this is just one of the many things we will have to deal with threw his life, i feel so bad all this is happening to him i wish i could stop these bad things from happening but unfortunately i am no super women, i wish i was though. but he is still overall better then he was before even if he is a little more puffy then a few days ago i just hope they can find out why he is getting a little bigger and turn it around before it gets worse. other then that nothing has really changed just waiting to see if he has any pockets of fluid built up in the x ray. 

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