Wesley and I have had a good day today.  We cleaned and played.  We even went for a couple of walks to the end of our street, “The Finish Line” and found a few rocks for his collection.

I talked to his nurse today.  Apparently, Wesley’s doctor just came back from vacation.  We will either go up this week or next depending on a lot of stuff.

One thing being that I found out today since rituximab is not indicated for nephrotic syndrome, it is not covered by his insurance.  His nurse is super nice and is trying to get it covered for us.  She doesn’t think it will work though.  So what do we do?  It requires hospitalization.  We owe still from his hospital stay in April 2011.  Do we try a drug that I am still extremely uncomfortable with and owe for the rest of our lives or try something else? The drug I am sure is super expensive not to mention the doctor’s bill and the hospital bill. I have no details other than that.  All I know to do is pray for the right decision.  I am a little leery of using this experimental drug anyway.  Maybe this is an answer to my prayers?  But I am also worried about the other treatment options  So hard to know what to do.

I can’t stand waiting and not knowing exactly what is next.  The nurse just told me to keep the next two weeks open.  Yikes!

Well, my poor child has been banned from gluten all summer.  I let him fill up on Frosted Mini Wheats all day long.  Then I bought him a pack of one of his favorite cookies.

Tomorrow will be a better day!


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