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Ryan’s Surgery September 17, 2015

Filed under: Uncategorized — ryangrace11q @ 11:34 pm

On Tuesday my sweet girl will turn 4.  I can’t believe it.  Time has completely flown by.  It seems like just months ago she was swaddled in my arms, like just weeks ago she was struggling to sit up, like just minutes ago she started to walk.  She is not a baby anymore and is asserting her independence more and more every day!  Look at my big girl!

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Next week won’t be all balloons and presents though.  One week from tomorrow Ryan will get surgery to help remedy a problem she has had since birth.  Ryan has kyphosis.  Most people know what scoliosis is and that it makes your spine curve to the side.  Kyphosis is when your spine curves forward, often causing a bend or hunch in the upper back.  Ryan’s kyphosis has been monitored by MRI every year and although her curve is mild (you’d never know by looking at her), her spine is beginning to push on her spinal cord.  Ironically, this is happening because her spine is starting to straighten out.  But because of this, there is pressure on her spinal cord which is causing a pooling of cerebral spinal fluid within the cord.  This is called a syrinx which can lead to damage to the spinal cord causing pain, stiffness, and weakness in the back, shoulders, arms, and legs.  Since Ryan can’t talk a lot, and especially can’t tell us how she feels, we have no idea if she is experiencing any of these symptoms.  Our only clue that this could potentially be causing damage is her lack of coordination and balance.  Although, like most things with Ryan, that could just be how she is… and fixing the syrinx may not actually help with her stability.  Only time will tell.

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So how does one fix a syrinx?  You make more room for the spinal cord, that’s how!  And to do this the neurosurgeon will remove part of her skull and the back piece of her C1 vertebra.  The area shown in blue will be removed.  This is a very typical surgery for people who have Chiari Malformation (which Ryan does not have).

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Ryan will remain in the hospital for 3 days or so.  She will come home and not leave the house for another 10 days.  Surprisingly, she will not need to wear any sort of neck brace because the neck is supported by the front and sides of the vertebrae.  What we need to be careful about is her incision and keeping it infection free.  Last week Ryan had blood work and a test for staph.  Since she has staph colonized in her nostrils (that sounds so disgusting but the reality is that most of us do), starting tomorrow we have to use a special soap during baths as well as an ointment in her nose.  I’m sure Ryan will really love that!

Although we have the utmost confidence in Ryan’s neurosurgeon and CCHMC in general, we are nervous.  For all that Ryan has been through, this is by far her most serious and invasive surgery and will be her longest stay in the hospital.  I know she’s a big girl now, but next Friday I will be counting the minutes until I can get my baby back in my arms again.  Safe and sound.

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2 Responses to “Ryan’s Surgery”

  1. Rebecca lyford Says:

    Liz. This is Rebecca. Alexandra’s grandmother. good luck to all of you!

  2. Justin Belarski Says:

    Good luck and Godspeed.


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