It should be obvious, by my absence, that there is a lot going on in our home. One day, the blog will be updated and pristine and clear and all that fun stuff. For now, we are schooling, dealing with personal issues, learning English and how to communicate with words not actions, and trying to maintain a house. Add in a dose of neurofibromatosis and all it’s jazz and sprinkle with a side of renovation bug that seems to have been caught by yours truly.
Yep. Busy.
Anyway, this week has been a roller coaster of emotions week. Emmie had an MRI on Tuesday. We spoke with her neurologist then. And then she had x-rays on Friday (today) and we met with her neurosurgeon.
Ready for the Roller Coaster Run Down?
On the MRI Ride:
Great News: Plexiform neurofibromas in her neck are stable!!! There is no signs of any issues in her windpipe or spinal cord.Bad News: MRI confirmed that there is another plexiform on her side. For my medically curious friends: It’s in the iliopsoas muscle. The radiologist was able to find an image of it on a previous MRI in August of 2015 and confirmed that it has gotten “slightly larger.”
Good News: We praise God that it is not near a major organ in her pelvis and that she has had zero problems with either plexiform over the past year (aside from needing to go up a size in pants because of a larger waist on one side).
Good News: Because of stability, we’ll be on a monitor/watch and wait stage.
Side note: Emmie totally rocked MRI day. She had a later appointment but didn’t have a single peep about being hungry or thirsty. She stayed occupied with stickers, baby doll and princesses on tv (Ahh, Disney Junior you are are awesome). All of this in her new Minnie Mouse PJs. Baby doll got to have her blood pressure taken too and even got a band-aid where she had her IV removed. We just love our nurses and techs and CHOA! Also, you know you’ve been in day surgery too much when the staff starts to recognize you.
Now to X-rays:
Great News: The spinal fusion is working! Dr. Chern showed me an x-ray from June and then the one from today. Her fusion is clearly visible and looks amazing! The bone is grafting just as it should. He got so excited and ran to find Dr. Reisner (the doctor who treated Emmie when she fell and who placed the halo and followed the traction) and showed him and they both were smiling big talking about how great kids bones can fuse. She is now on a six month monitoring and will be anywhere from six months to a year with neurosurgery the rest of her life.
Bad News: Scoliosis x-rays confirmed that she indeed has levoscoliosis. The curvature degree is 27 in the T7 to T12 area (for the medically curious again). I can’t give any definitive information about what that means until we meet with a orthopedic doctor. In the meantime, I am sharing the images with our chiropractor and she’ll continue to treat Emmie.
