Scope Reveals Worsening Condition
Todays scope went okay but the photos needed no explanation. As soon as I saw them before our doc even said a word I knew things had gotton much worse. He has numerous ulcers in his colon that when lightly touched blood ooozed out of. Its hard to understand when you see him running around loving everyone and loving life. It took all I had not to lose it talking with my doctor who has seen both the steller and emotional side of me. I had to focus on what to do now. I have been praying to God for a sign of what should be. What our next step should be and after last week I knew this was what we were going to have to do. It looks as if none of the drugs used for colitis are working on Simon and I was told his only hope for healing is the remicaid. Its a very hard thing to swallow considering this is totally unchartered territories for NEMO boys. I have contacted Dr. Orange and e mailing with him again and he too feels we need to do this and I respect his opinion. He tells me it is scary and we can only hope and pray for the best to help Simon. It is hard to be ok with any of it. WE do not know what Simons new immune system is doing and we probably will continue not knowing with all the additional suppression we will place upon him.
We love our children and mothers day always brings the love out so much more for all of us but there is nothing in this world I wouldn't do to fight for and heal Simon. I am hoping for a better weeks since last week we were hit with several obstacles from minor to concerning and this week we just have to hand over our worries and ask God to know what he is doing. Its all in his hands. Please pray. My heart remains heavy even though I feel the decision weight has been lifted, its not for the reasons I had hoped. God Willing Tracy
We love our children and mothers day always brings the love out so much more for all of us but there is nothing in this world I wouldn't do to fight for and heal Simon. I am hoping for a better weeks since last week we were hit with several obstacles from minor to concerning and this week we just have to hand over our worries and ask God to know what he is doing. Its all in his hands. Please pray. My heart remains heavy even though I feel the decision weight has been lifted, its not for the reasons I had hoped. God Willing Tracy
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