The Surprise Turn

As we drive home after another great week at the TMA’s family camp, I can not begin to express how grateful I am for the camp experience.  Family Camp is a magical place. My daughters love all the camp activities. Boating, fishing, arts and crafts, swimming, wood shop, music... The list keeps going. They see camp as a place for nonstop fun, and my husband and I love to experience that with them. For me, the amazing thing about camp is the knowledge I gain. When your child has a rare disease, there are tons of unknowns. Camp provides a chance to learn from other families and the medical professionals that attend camp. There is something so amazing about being able to sit down at dinner and talk to another family who knows exactly what it is like to balance daily life and endless doctors appointments.   I cannot even begin to explain how amazing the doctors and nurses are that attend camp. They lead educational sessions every afternoon for the parents. I love t...

I am not going to lie, I was nervous about getting a second opinion regarding my daughter's illness.  I love her team of doctors.  They have helped us so much, but I had some lingering questions that were not getting answered.  However, seeking a second opinion felt like I was "cheating" on our doctors.  Would they be mad?  Would they be offended? Ugh, the guilt! Finally, I decided hurt feelings or not, I needed to do this for my daughter.  In the end, I was VERY glad we got that second opinion.  We gathered some valuable information.  My daughter's original team of doctors were amazing and even agreed to collaborate with the second opinion team.  I'm glad that I listened to my instincts and ignored my "need to make everyone happy" guilt. Here's some things I learned through the process: 1. Before even making the call to schedule a second opinion, start gathering all your medical records. 2. Request CD copies of your child's MRI scans...

Someone asked me recently how to explain Neuromyletis Optica (NMO) to a child.  Not an easy task, I can tell you from experience! When my daughter was diagnosed, she was 11 and her sister was 8.  We explained that everyone has an immune system.  Our immune systems are like the superheroes of our bodies.  They fight off germs to help keep us from getting sick.  For some reason, big sister's superheroes were confused.  They were fighting too hard.  They were attacking the germs, but they were also attacking her body too.  Those crazy, confused superheroes!                                                          We talked about how our brains have these things like wires going through them. The wires have a special covering to protect them called myelin.  The myelin is kind of like the protecti...