Joshua (St. Louis)

Joshua was born Oct.29th 2002, he was jaundice almost straight away, we tried lights to bring down his bilirubin but it kept creeping up. After several stents in the hospital and numerous blood tests and different meds it was decided a Hydascan would be needed to see if he indeed had Biliary Atresia. The Hydascan revealed a missing GalBladder and enlarged liver so it was off to the OR immediatly for a Kasai, his Kasai was (Thank God) succesfull and he is now nearly 8 yrs. old, he has had none of the expected problems associated with BA, he is of above average height and weight, no infections or or hospital stays since his Kasai, he has been medication free for 5 yrs,I guess you could say he is doing extremly well, but I still have doubts about his future health, we see our specialist once a year and this years visit he started explaining that we are going to start regularly monitoring his spleen via ultrasound and checking for portal hypertension which scares me to death! This is a very condensed version of Josh’s story -I would give you the whole thing but it would take forever, besides the point is he is healthy and happy and the light of my world, he makes everyday special for me he loves with his whole heart and soul, if Joshua says he loves you you should consider yourself very loved because he means t in the truest sense of the word, I know so many families are suffering with this terrible monster of a illness and my heart breaks for those who are suffering.

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