Things are Stable/Good
Sorry for the delay in posting. Seems the days are just slipping past me. Simon had another infusion of remicaid on thursday. He tolerated it well and he is still having the 3-4 stools a day. Tomorrow is our last dose of xifixan until December if all stays stable. The gi doc wants to rotate it to two weeks out of the month so I think if he does ok without it we should try to stay off it. Still not sure completely what is causing all of this but if the remicaid helps it certainly makes you think the TFN proteins in the gut. There is alot of research being done on mice to see if it is probable. Other than that he is not sleeping at all. No naps and up between 1-3am every single night. Its starting to get to me. I'm feeling pretty run down today so hopefully I'll grab some sleep tonight and feel much better tomorrow. The weekend was good. We spent friday making smores and raking leaves and then I attended a fundraiser for pediatric and teenage oncology/cancer patients which a good friend of mine organizes and every year it gets bigger and better. Sunday I was able to enjoy the rockettes christmas show with the girls and their grandma terri so the weekend was nice. Keep praying for good numbers and healing of the gut and skin. He is having outbreaks of larger sores on his legs and arms that are still very itchy and his igg is down so monday might bring a long infusion day at the hospital. We'll see. Please continue to pray for him and our family. God Bless. Tracy
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