Well it looks like we are going to have to go ahead and give simon the remicaid drug to help him get better. He is not improving at all with the diarrhea. I am changing him for that 7-10 times a day and we finally just got his butt back to where we can touch it without him screaming. How we'll ever potty train him like this is beyond me. I'm not sure he is absorbing much because of the output. I took him off dairy for 48 hours but still nothing much has changed. He really has not grown in height or weight for over 8 months or more. It is such a hard decision given what we know the remicaid can cause but its also so hard to continue to watch simon go through this. I have noticed some weakness in his right side and he is actually favoring it when he runs so I am pushing to get him off the steroids. Noone really thinks they have made one bit of difference anyway for the better. I am consulting with the docs to see what dosing we are going to use for the remicaid and how often he will need it and for how long. Unfortuantely it is not a one time dose of it and we are ok, it is spread out at the same dose for a period of time and hopefully he will not need as much once we get it under control. At any case its given through the IV so that puts us to two IV infusions of different meds through his chest port. The severe possible side affects of lymphomia and death never leave my mind. Never. I've had an especially hard time the last two weeks trying to make a decision and do whats best for Simon and a dear friend of mine who knows all too well how it feels to be in this type of situation put it to me this way "we are doing a great job but things are not in our own hands. We only do what we thik is best for our sons and try to conform as much as we can. God sent you this angel because he trusts in you, he knows you are a very special mom that can handle this, make the right decisions". I hope she is right. Please pray for Simon, the love is two fold. God Bless. Tracy
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