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.
Ceili Rain made sure Emmie grabbed the ripe ones.
Bryant decided he needed some shade and donned Emmie’s pink hat.
This girl can pick some berries ya’ll!
Winter the Cat in her jacuzzi.
Doughnuts. Does it get any better than this?
Peek-a-Boo
Emmie learned to crawl in June. I thought that developmental milestone had passed. But once the braces came off and her neck wasn’t perpetually in a forward motion, she started crawling. Now she gets on all fours and declares, “I a dog. Arrrf.” and takes off.
It’s hard to see, but Ceili Rain colored my hair purple with an exploding purple paint pen.
My brave, cute and amazing girl!
And a silly dress up one.
Smudge declared this day was a computer free day. And enforced it.
Before
After
Cuteness? Of course.
It’s a triple see saw.
My doll.
Selfies with mom.
Showing Mama the pictures while we drive.
This was the year I finally remembered to hit up the dollar store and grab up all sorts of fun glow in the dark things. The glowing orbs are actually glow balls and were an instant hit!
Just because she is adorable…and doesn’t have a neck brace.
Oh look! A minecraft gift…surprise, surprise, surprise.
In their congressional area.
ON the front lawn of the capital.
There were statues all over the grounds. 
A rotunda that was added when they needed more space (instead of building out, they built down and added over 600,000 square feet underground.
The chandeliers spell out Texas and there are Texas stars everywhere.
Renie was the very first NF mom to message me and has continually poured her heart in to our family and lifted up countless prayers for Super Ems. It was such a blessing to finally see her face to face!
Since Emmie is now in the general anesthesia camp for MRI time, we have to go to day surgery instead of to radiology. That means a different way to do things (they have to intubate for long MRIs and such).
