Where We Are Now

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) seemed to be a possible fit.  It can present very similar to MS, but needs to be treated in a completely different manor.  The doctors at Ruby Memorial agreed that they were not the experts, and that they would definitely seek out an expert.  So, through Facebook groups, googling, and with the help of our local pediatrician, we found Dr. Levy, at Johns Hopkins.  He is not only an expert, but developed the initial blood test to find the MOG antibody in the blood.  

So, calls were made, referrals were made, and we were hearing nothing back.  Finally, we found out that Dr. Levy had moved to Mass General in Boston, and would be opening his new office on July 12th.  So, again between ourselves and our local pediatrician, Dr. Seeger, we found his new office and worked with his secretary to try and get an appointment.  We waited for weeks, and were finally called on July 9th and given an appointment for August 1st.  So, Boston, here we come!

I also wanted to share some additional videos that show her progression through this.  We share this to bring a better understanding of what is going on with her, but also to share with others that may be in the same boat that we are.  This is a scary journey, but we are hopeful that by sharing, good things will come from it.  

June 20th

June 29th

July 9th

I will admit that this is the short story to bring Virginia's story up to date.  There has been frustration, tears, questions, uncertainty, and so much waiting.  We are so hopeful that we will receive answers and treatment in Boston.  We will document the entire journey on this blog.  We appreciate all of you who follow us, send sweet notes, and just send out all the love!  

Our sweet friends loaned her a cane that she decorated!  It has helped a lot with her being able to get around independently!