Wednesday, April 24, 2013

Running underwater



Everything about this nasty disease just sucks.  Every time we do blood work we hope to see a normal white blood cell count.  It has not been normal in over a year.  That is in fact how this all started, high white blood cell count.  So every other Monday we find ourselves a bit disappointed and just feeling as if we have no idea what to do.  I even asked her Rheumatologist if we can just consider high her new normal and was reminded that high is not good and not a new normal.  So each appointment we add a new medicine or increase an existing one.  This last time we increased the cyclosporine, a potent immunosuppressive agent. 

With all that has happened this past year we watch carefully for any changes.  So far Emily has improved so much health wise and emotionally.  The rash has not been around at all and she hasn't had a fever in a year.  She is happy and off physical therapy completely, although we continue with water therapy to keep her joints moving and help increase strength.

In the past few months we have noticed a decline in school.  She is only in kindergarten and since her birthday is at the end of the year she is one of the older children in the class by virtue of missing the cut-off date to enroll.  I just happened to mention this to the Rheumatologist because I know inflammation can occur in the brain and at her onset she had an episode of night vomiting, a symptom of pressure in the brain, and Vasculitis (inflammation of blood vessels) is a constant plague.  When I mentioned it the doctor replied immediately that yes this nasty disease could cause learning disabilities, but to find out if that is the case we'll have to do more testing and that can cost up to $5,000 because it is not covered by insurance, even our great insurance. 

So, since the brain is a muscle we are going to start getting Emily to exercise her brain more.  If she tells us she wants to learn something, she asked if she could learn Spanish, we say yes and so she is going to her first Spanish class after school tomorrow.  We don't know how well it will work out, but just like teaching her how to exercise her joints without hurting them we've now got to teach her how to work around any learning difficulties she may have.

There is just so much nastiness to this disease that such a short time ago we didn't know even existed.  Have you ever had a dream where you are trying so hard to run fast and you can barely move as if you are trying to run underwater? That is how we are feeling right now; but we shall keep pressing forward and do whatever we can to tell everything that children get arthritis too and they need a cure!