Gearing up

Well, the break was nice but reality is setting back in.  I am preparing for a big week!  Remember the Mitochondrial test results we have been waiting for?  Hopefully I will hear about those results tomorrow.  I guess I don't really care if they have it or not, well, of course I care, I don't want them to have it!  Either way, I want it to be definitive, that's what I mean.   I don't want to hear, "Well, it's not clear if mito is what they have. We would like them to come for a muscle biopsy so that we can confirm it that way." If that is what I hear, then it will be an entire year before we ever find out for sure.  I just don't want to drag this on.   I am glad for the rest I had this past week, it has put me in a better place for hearing this news.  Being tired and worn out doesn't provide a very calming place to hear bad news.
     The next big thing this week will involve Spencer.  They have confirmed his 40 allergies through the skin test a few weeks ago.  This Thursday, they will have to actually inject him with those 40 allergens so that they can get a specific reading and formulate the weekly drug he will need to be injected with.  I don't imagine that is going to be very fun.  The first round left him really sick that night.  I can only imagine how he will feel after this.  More missed school...sigh.   I hate school more than anything!  Trying to get him caught up is worse than anything I can think of...seriously!
     Shelbie will head in first thing tomorrow to the hospital for a blood test to see where her platelets are.  It's so weird not having any idea where they will be.  She has a couple of spots of petichae but it's hard to say. 
I can say this, I hope that whatever happens this week, we will be able to take it in stride and that these infusions will begin to feel like our 'new normal', a routine that is no big deal.  That would be a really nice feeling!


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