Sweet Virginia's Journey

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 an

The other day, as I pulled into our driveway and went to get out of the car, I looked up and saw the handicap placard hanging from the mirror.  Never in a million years did I think I would see one of these in our car, and especially not for our 11 year old daughter.  I also remember the day that I picked up the signed form from her Dr. and took it to the DMV.  It was hard to look down and see the doctor's reason be, "patient is severely limited in their ability to walk due to arthritic, neurological, or orthopedic condition."  It was also hard to see that he checked the permanent option instead of temporary.  It really made me sit back down, and just try to process how I was feeling. If I am being honest, I don't even really know how I am feeling these days.  I think I may even be a little numb so I can keep pressing forward for answers, and be strong for Virginia and everyone else. I also must say that my husband is amazing, and always help me try and figure out ho

So, after leaving the hospital the first time, her leg pain, weakness, and sometimes inability to walk was beginning.   This is a video that I took on June 5th, before we were admitted again on June 11th.  Unsure what to do, we went back to Ruby Memorial on June 11th for an MRI of her spine, and for additional appointments with neurologists and ophthalmologists.  She had also not regained any new sight by this time.  Her MRI of the spine came back clear, which was great.  However, they told us that with the amount of steroids she had been on, the results may be skewed.  When we met with the neurologist, we asked about the MOG positive results from her blood work.  They said that they really couldn't say without waiting until September and repeating the blood tests and MRI.  We did not consider this acceptable, and began doing some research, and looking for a second opinion. Upon googling her symptoms, we found that MOG ( myelin oligodendrocyte glycoprotein) seem

I wanted to start this blog as a way to share information, give Virginia something to look back on, and to also help others who may have or being going through some of the same things we are.  I  should also probably start with some background about all of us.  I am her Mom, Kimberlie, and I will be writing this blog for the most part.  Her Dad, Clay, is just about the best dad and husband on the the planet.  I know I am biased, but he is an amazing rock for our family, and I would be a mess without him.  We have 3 daughters, Virginia is 11, Charlotte is 8, and Elizabeth is 5.  We live in Franklin, WV.  I am a substitute teacher, and Clay works for Pendleton Community Bank in Public Relations.  Now, I will get back to how Virginia's journey began! Around the middle of April, Virginia had been complaining that her left eye felt kind of funny, and that she just wasn't feeling great.  I kept telling her it was probably just her allergies, and I used eye drops and gave her ib