Friday, January 11, 2013

Nero Update

So I don't know if what we found out was good news or bad news.  Her Nero doctor thought that her right side weakness (in her arm and leg) was more brain related then clot related.  She also noticed that Raygen has some right side weakness in her face.  Raygen has blood clots in her right arm and right leg.  The doctor stated that if the weakness was clot related Raygen's arm and leg would be smaller then her left and would be weaker.  In Raygen's case her right arm and leg are bigger then her left and she has less muscle tone because she favors to do everything with her left arm and leg.  I hope that makes sense.  So the next steps are setting up more appointments.  Nero wants us to see a blood doc to make sure she doesn't have any blood disease and have a pt exam.  After these appointments we will see Nero again and then schedule and MRI.  Raygen will have to be sedated for the MRI so as you know we are not looking forward to it, but at the same time we really need to make sure we are not missing anything that could become or could be serious.  So I left the Nero appointment sad and nervous.  So many "ifs" and unanswered questions to whether Raygen has had a stroke sometime in her life or if she has something like a tumor in her brain.  Both so scary.
Today Raygen also had her second synagise shot.  I felt so bad for her because the shot was very painful and she cried for such a long time.  Now my girl is happy and laughing at Sesame Street so although we had a tough stressful couple days the weekend it starting out good.  There is no better sound then my girls laughing.