A Conversation I Never Thought I Would Have

When the phone rang the other day,  and I saw the area code for Boston, my heart skipped a beat.  I was so afraid that it was a call saying they couldn't see us on August 1st. You see, most of my anxiety at the moment hinges around our impending trip, and my fear that we won't find the answers that Virginia so desperately needs.  I also rationally know, that the odds of that are pretty slim.  We are headed straight to the expert in the field, one of the best hospitals in the world, and all roads have led us here.  It can just be pretty hard to live in rational land these days!  But, the phone call was not about that at all.  Little did I know the actual conversation I was about to have.

It was our doctor's nurse.  She wanted to give me protocol for Virginia regarding her immune health.  They wanted her, and us, to start taking a high dose of Vitamin C, called Lypo-Spheric Vitamin C.  I had never heard of this, but it is the best vitamin C you can take, the body uses and absorbs all of it, and I am pretty sure we will all take this during flu season, and any time we feel something coming on.  She also starts talking about how we should really try and keep her out of public places to limit her exposure to germs.  She said the pool was still okay, but stores, restaurants, etc. should be limited. 

You see, they don't want her potentially picking up anything that could cause tests to not be done or results to be inaccurate, or for her to miss out on any potential treatments because she was sick.  She said to please keep her in a wheel chair in the airport, wipe down everything, and do our best to limit what she touches. As if I don't have enough thoughts in my head, now I am hyper vigilant about germs and her exposure to them.  Again, I never thought I would be talking about our daughter like this, and even having to think about germs in this way, other than when flu season rolled around at school.  

I can recall so many times seeing parents with their child out and about with a mask on the child's face.  I always smile at those children and the parents.  I have no idea what they are truly going through, but I feel like a smile is the best I can give them.  Now I understand, and as a parent, I can truly say that just a smile from someone really does mean so much!

Then, the nurse says, we also need to talk about seizure protocol.  Virginia has started to develop some really bad headaches from time to time, and they said that the chance of a seizure is slim, but that we should be aware of them. Virginia has also developed foot and toe twitches, and she said that it all definitely goes together.  

These are videos of her twitching feet.  Again, we share all of this in the hopes that others will understand, but also maybe someone else will see these videos, have the same symptoms, and maybe our journey can help them on their way to find answers!

Then, finally she asked me if I had any questions.  I told her no, only because, to be honest, I felt like my head was going to explode.  Did I really just have a conversation regarding seizure and immunity protocols regarding the health of our 11 year old daughter?  I didn't even really know what to say, or what to ask.  This is all a world that I just never thought we would be a part of.  Honestly, we truly have no idea where life will lead us.  Today, we are one week away from our flight to Boston. We are one week away from the beginning of the next leg of our journey.  We are one week away from what we can only hope will be the beginning of true answers for our Sweet Virginia!

I will say again how absolutely proud of our daughter we are.  The amount of abuse her little body is taking right now, and her ability to smile and say that she is fine, melts my heart every day!  We can only hope that you will all have the same attitude in your own lives, and continue to spread the kindness and love every single day!