Curve-ball

It’s about a time for an update.  Emmie had a five month check up for her scoliosis in November. We met with the nurse practitioner at her orthopedic doctor’s office.

The Good New:  Her curve has increased to 29 degrees but is still considered stable since it is still under a degree a month (last measurement was 27 degrees in June).  Basically, we can say the brace is slowing down the curve progression.

The Bad News:  Her spine is leaning significantly more to the left than it was in June.  This is obviously not a good thing.  The nurse practitioner stated that Emmie would need to meet with her orthopedic doctor for the next check.  If the x-ray shows more leaning, then we’ll have to look at a different intervention.  We set her next appointment for five months from November.

A week later, Mark and I were talking. We both realize that NF kids have crazy, weird bones that tend to do their own thing.  We reflected back to Emmie’s second MRI and how her cervical kyphosis came up but was dismissed and only six months later it went from a “possible positioning” to “severe cervical kyphosis.”  We were blindsided and will always wonder if the progression were caught sooner would we have been able to delay the halo even more.

Because of all of that and after consulting our pediatrician, we decided to seek out a second opinion.  We’ll be meeting with a doctor at Shriner’s Hospital this month just to make sure we don’t need to be a bit more aggressive in our treatment.

Like I said earlier, NF bones do their own thing and don’t like to follow standard early onset scoliosis protocol (if there is such a thing).  We know she’ll need stronger interventions for this part of NF.  While we would love to wait as long as possible for those interventions, we know if she needs it now, then so be it. God has shown us over  and over again that He is in control of Emmie’s life (well,all of us,but we can see it more clearly with Emmie).  We trust Him to lead us and the doctors we are meeting with.

 

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