I’m sure everyone is wondering what the plan is now.  Our immediate plan includes five months in the halo or until Emmie is between 20 and 21 months.  She’ll then have surgery to place what Dr. C calls a “straw’ between either two or four vertebrae in the front of her spine.  They may or may not fuse the spine in the back for added stability.  They will go in to the front to do the work because that is where the bend is.

This is all up in the air but all the neurosurgeons agree that they do not want her in a halo past five months before she has surgery.  Once surgery is done, she’ll stay in a halo for about three months before they remove it.  Then three months after that, if she is stable, we are done with this part of NF.

Yep.  I said this part.  Remember, I said this was a marathon.  Unfortunately, NF is a progressive disorder.  But it is also unpredictable.  It is our understanding that we’ll be addressing the issue of plexiform growth after we get the spine situated and stable.  Of course, since all cases are unique and different, those plans may change too.

All we can do for now is enjoy our “new normal” and hang on and pray.  We may not know what in the world is coming at us next, but we do take great comfort that God knows it all and knew it all before we ever started this journey.