Well, it’s been five months, an ER trip and multiple x-rays.  This is the magical time that we have been waiting on since Emmie fell in August. Originally, Emmie was supposed to go in on January 8th, but our neurosurgeon, Dr. C needed to see the CT scan first.  Fast forward a few weeks and then there we were.

Thursday Emmie had a CT scan under general anesthesia.  After she was done, we met up with Emmie’s neurologist, Dr. W.   Then Friday, we were back at CHOA to meet with Dr. C.

Emmie did wonderful on Thursday.  Naturally, she cried as soon as we entered her room in Day Surgery but she soon calmed down.  The nurses are starting to recognize us too.   This was after the “happy juice.”  That and whatever anesthesia they used made her think she was The Flash.  After she woke up, she tried to get up out of our arms.  When we were discharged and walking down the lobby to the cafeteria, she tried to run.  She didn’t run before the super meds…but yet she thought she could on unsteady legs.  We got a kick out of her trying to be so independent.

We’re always a bit nervous on scan days because of the results we have gotten in the past.  This time, was not as painful.  From what Dr. W could tell, the plexiform (tumor) is staying in her neck.  Because she didn’t cry out in pain when we press on the plexiform, he also felt it was a good sign.  She smiled for him and allowed him to do a neurological exam.  She is still on track for being pretty much awesome.   We know the plexiform has grown from what we can feel but the specifics can not be seen except on an MRI.  Once the surgery is done and halo is off, she’ll be having an MRI to get a better look at the plexiform.

Little bit was super exhausted when we left CHOA.  When Emmie is anxious, she wants to hold our hands especially when she sleeps.

Friday was very hard.  We knew that the detailed appointment was coming.  We just weren’t prepared for the reality to settle in with all the details.  Now it’s real.  Now it’s game time.  We were reminded once again that Emmie’s spine at this age is not the norm for the medical community.  We are so grateful that Dr. C has been reaching out to other neurosurgeons across the country to make sure he is doing the best thing for her.

Before I dive into surgery details, I wanted to mention something.  Several people have assumed that the halo is the fix.  It’s not.  That’s easy to think because most of the time when an adult or older child has a halo, it is because they have a break.  Just always keep in mind that Emmie is different.  The halo brace was placed to keep her spine stable until her bones were strong enough to take a surgery to them.  The doctors did not want to keep her in a halo much more than five months without trying to correct the spine (halos fail after a certain amount of time and constantly have to be monitored.  Also, she has grown quite a bit since August).

This was the curve in August using MRI (the details on the spine are not as clear as a CT) and before the halo traction.

This is the CT scan from Thursday, the 21st.

There has been some improvement from the scan in August but it has stayed completely the same since after traction.  The good news is that the halo has and is continuing to keep her spine stable.

She’ll have surgery sometime in February, probably toward the middle of the month.  She’ll be in the hospital for 7 to 10 days.  However, Dr. C estimated 3 to 4 days for the plexiform re-section in April and she was only there 24 hours.  We know we’ll be there longer than 24 hours but would be super excited if it was less than 10 days.   After surgery, she’ll remain in the halo for at least six weeks to continue to allow her spine to strengthen.  Then, the halo will come off and they’ll monitor her really closely for awhile.  If there is any indication that the spine is beginning to bend again, she’ll be put back in the halo.

Surgery is going to be long.  A lot of decisions they make will be when they start the procedure.  Right now the surgery consists of three parts:

1.  They’ll remove more of the plexiform to get to the spine.
2. Anterior-They’ll go in to the front and remove and replace two of the vertebrae (the two that are shaped like triangles but supposed to be rectangles). The replacements will have to be custom made for Emmie because they don’t make them small enough for her.
3. Posterior-To provide more stability, they’ll put in rods in the back of her neck and will fasten those with either pins or wires depending on the bone thickness.

There it is.  The condensed version of what is going to go down in the coming months.

Dr. C thinks the world of Emmie and we are trusting God to provide healing for our amazing super hero.  Right now, I don’t know what to think.  My brain is in planning mode, but experience tells me to enjoy each moment with our family right now.  Now is when we’re reminded that we aren’t in control and that each moment is precious.

We’ve put together some shirts to go along with Emmie’s fight.  This campaign closes on February 1st.  Check them out here.