NF Fighter Update #2

What next?

Well, that's a good question.

First of all, Emmie will have a post-op follow up appointment.  At that appointment, we'll discuss when her next x-ray and other monitoring tests are.  We already know that she'll have her MRI in June as originally planned.  This MRI will really show whether the tumor that was in the bend of the spine is gone.  She will probably also have an x-ray then too.

Until June, at least, she'll be in another brace.  As I mentioned in the previous post, this is the third brace she has had.  The first two were cervical collars.  She broke the first one at four weeks and the second broke at a week.  Dr. C wanted her in a more rigid collar so she is now wearing what is called the minerva collar (yes, because of the Greek mythology).  We're all hopeful this collar will actually last.

When we showed the neurosurgeons what her collar looked like they all said, "Huh, never seen that before."  Yep, that's our girl.

Emmie is a very unique case because typically plexiforms will push the soft organs/tissue first.  For some reason, that hasn't happened and it's her spine that is being pushed around.  Not only that, this is the youngest child that several of the specialists have seen dealing with a plexiform and kyphosis.

Dr. C mentioned that he hopes these collars will buy us two years before surgery will need to be done to correct the kyphosis.  As I've mentioned earlier, she is so young that her bones are still so soft and any type of rod placement at this age would just not be successful.  The older she is the more successful surgery will be.

And, there is always the possibility that the tumors continue to grow and cause issues.  That is something we just don't know and can't predict.

It looks like we'll just be living and planning from MRI to MRI right now.

We are praying for no tumor growth and an improved kyphosis in June.  From there...who knows?!

Saturday was the first day with the new collar.  They had to go up in size on the neck piece because they don't make the minerva part to fit the triple 0 size she had.  This collar is going to take some getting used to on everyone's part.  We had to change her wardrobe to just onesies or larger clothes that fit over it (layers won't happen much in the summer).  I made her a couple of dresses to go over the brace for church and wear around.  I also am making up some bloomers to wear the onesies so she can still be a unique fashionista in her own toddler way.  I'm so very glad that I can sew and that I have a plethora of scrap fabric to do these quick sew projects.  Now we're just trying to figure out how to make the brace more comfortable for us when we carry her!  We'll figure it out.  We'll adjust.  And we'll carry on.  By God's strength, that's what we do around here.

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