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Showing posts from December, 2019

In a World Where You Can Be Anything, Be Kind!

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

The Journey Continues

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