It’s okay she is turning colors…

Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.



Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!).  This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later. 

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:
  

This is what Boo has and this is how we are going to treat it.







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