Standing in my toybox =)

Standing in my toybox =)

Thursday, January 13, 2011


i really just don't know what to do! i have made the choice that a feeding tube yes would be the best thing for vince! However since i found out he has thrush i am hoping he will eat something by monday..right now he is just screaming at the sight of food!!!! his food (yogurt) my food (baked raviolli) but is still drinking 5-6 ounces in a bottle about 3 times a day! i called the CF center since everything (all the fighting with vince) makes sense and falls into place! he fights his treatments,CF center says these can irritate the thrush but to continue with them and brush his teeth and tounge VERY well after! he will currently not take ANY oral meds..i will not eat even a BITE if food for enzymes..his poop isn't and hasn't been greasy, in fact has been a bit hard but not like mirilax im not doing the enzymes,i try his zantac and he spits it everywhere instantly! the doctors know he hasn't had vitamins or salt for quite a while now and we are working to find a way to get them in but no luck! the CF center also said to NOT use probiotics to just brush his teeth better..ok first off he gets his teeth scrubbed twice a day with a baby/toddler tooth cleaner! but hello! he has an oral aversion, i do the best i can! the CF center is always telling me not to take him anywhere but to them for any type of treatment because no one has experiance with CF..well maybe the CF docs need some experiance with oral aversions since vince's was caused by having to force all this F-ing medicine!!!!! im so frusterated STILL!! he cries all sister and i had a lunch date and he cried through that..luckily we went to a not so busy place! he threw up this morning from the oral nystatin which means he also threw up his tylenol..and something must not be working in his stomach because when he threw up he hadnt had any form of milk or pediasure for about 8 hours before hand!!!! i need to start my list of questions for the docs on monday..i finally come to admit that even though "I" want vince to look normal and not have scars on his body that right now its whats best for his health!!!

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