Sweet Virginia's Journey

We are currently at  WVU Children's Hospital  for Virginia's fourth infusion of IVIG.  I am sitting here looking out the window, watching it snow, and thinking about our Sweet Virginia.  She is just the most amazing kid.  If you know her, again, she will always tell you she is good or great.  Even at home, she is a little more honest, but still puts on a brave face most days.  We talk about her disease when she wants to, and I always tell her that it is okay to tell us exactly how she feels about it.  She always tell us she knows that, and she loves us.    For the first time today, she said, "Mom, why is life so unfair?"  I said, "What do you mean sweet pea?"  She proceeded to tell me that she just wonders sometimes why this happened to her, why she has to be in the hospital when all of her friends have a day off from school, and why do kids get sick anyway?  Well, my Momma heart just about broke.  I swallowed my tears, and said, "You know what, you a

We just don't have enough words to describe how proud we are of our Sweet Virginia.  A few hospital stays ago, Virginia was in need of a clean pair of pajamas.  We were not expecting to stay as long as we had to, and I had not packed enough clean pajamas for her.  Our nurse was kind enough to bring a pair to Virginia, but just happened to mention that they were running low.  On the way home, Virginia said, "Mom, we need to have a pajama drive or something to give pajamas back to the hospital." We were able to collect about 20 pairs of pajamas through her school to bring with us for her November infusion.  She was so proud to hand over the pajamas, and I was crying happy tears!  I have a tendency to do that, and now Virginia looks and me in these situations and says, "Mom, no crying in public!"  I tell her, I cry because the kindness is so amazing and warms my heart so much, I can't help it!   After we came home in November our local Chamber of Commerce c

I have not posted on our Sweet Virginia's website in a while.  To be honest, most days, I don't even know what to say or where to begin.  Today, four days until Christmas, we are at Ruby Memorial Hospital in Morgantown, WV where our Virginia is receiving her 3rd monthly infusion of IVIg.  I am sitting beside her bed writing this post, and she is sound asleep because of the medicine they have to give her after her infusion. The last time I posted, Virginia was on Cellcept, which is a drug that we hoped would suppress her immune system, and get her body to stop attacking its own nerves.  However, that medicine failed, and Virginia lost her ability to walk for over a month.  So, what do we do next? Well, we talked to her fabulous doctor, Dr. Levy, and he said our best bet was to give IVIg a try.  I had mentioned this treatment in a previous post, but at the time there was a shortage of IVIg (   intravenous immunoglobulin) , and we just weren't ready to go the infusi

As so many of you have followed and joined our journey, we wanted to share where we stand now.  Our sweet Virginia has been officially diagnosed as MOG ( myelin oligodendrocyte glycoprotein) positive.  Basically,   MOG is the body attacking its own  myelin, which is the outer covering of our nerves.  There is no actual cure, we treat and manage.   We went to Boston specifically for an appointment with   Dr. Levy ,  who is the expert in the field of MOG.   This trip had brought us so much anxiety for so many reasons, but when we sat down in his office, he immediately made us feel like we had known him forever, and that together we were going to make this happen.   He immediately confirmed her MOG diagnosis, and we started talking about a plan.    He took us through all the options, and we decided that the best place to start was to put Virginia on CellCept for at least the next three years.  He told us that CellCept would not bring any of her current symptoms back.  He said that h

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