MRI Results (facebook update #2- June 21, 2013)

We received Marleigh's MRI results yesterday morning (June 20). They discovered a Chiari Malformation (brain tissue protruding into the spine) as well as a large syrinx (fluid-filled cavity in the spine). The Chiari is the cause of her scoliosis, and most likely the syrinx as well. We have an appointment July 3rd with a neurosurgeon at Cook Children's downtown. Treatment for this is usually brain surgery.

As much as we want to hide under a rock with her and pretend this isn't happening, the world keeps on spinning; life doesn't pause to allow you time to grieve. Very weird experience trying to process these new emotions and keep up with the everyday chaos of a family of five. Just want to thank you all so very much for your love and support through all of this. It really means the world to us.

Photo from MRI on June 18. She was super nervous- until they gave her the "goofy juice!" 

She handled it all wonderfully, and afterwards chowed down on some bean & cheese nachos and ice cream from Abuelo's mexican resturant ;)

Diagnosing Scoliosis (original facebook post- June 13, 2013)

On May 14, 2013 Marleigh was diagnosed with scoliosis. We've been on a roller-coaster of emotions these last 4 weeks, and quite torn on how much of this information we would share with the world. We've decided it could be beneficial to everyone, especially us, to include our friends and family on this journey.

X-rays showed a leftward 38 degree curve in the upper (thoracic) portion of her spine. Being diagnosed with scoliosis at this age is rare, but the direction and location of her curvature are even more rare and increase her chances of having underlying conditions causing the scoli. She has an appointment for a spinal MRI under sedation scheduled for Tuesday June 18th. They'll check for things like tumors, brain malformations, spinal abnormalities, etc.
June happens to be Scoliosis Awareness Month, and as we anxiously (and nervously!) await her MRI this seemed like a great time to let everyone know what's going on. While this journey will most certainly shape her, even limit her at times, it will not define her.